Annual Report
Illinois Health and
Hazardous
Substances Registry
July 2017 through June 2018
November 2018
State of Illinois
Department of Public Health
Annual Report
Illinois Health and Hazardous Substances Registry
July 2017 through June 2018
A Report to Governor Bruce Rauner
and the 100th General Assembly
from the
Illinois Department of Public Health
Nirav D. Shah, M.D., J.D.
Director
Prepared by the
Division of Epidemiologic Studies
November 2018
Annual Report July 2017 - June 2018
Table of Contents i
Table of Contents
Acronyms ...................................................................................................................................................................... iii
1. Executive Summary ................................................................................................................................................ 1
1.1 Illinois Health and Hazardous Substances Registry (IHHSR) Goal .............................................................. 1
1.2 Fiscal Year 2018 Highlights ....................................................................................................................... 2
1.3 Illinois Health and Hazardous Substances Registry Coordinating Council ................................................. 3
1.4 Goals for Fiscal Year 2019......................................................................................................................... 3
2. Program Data ......................................................................................................................................................... 4
Table 2.1 Registry Data Collection ................................................................................................................... 4
Table 2.2 Registry Data Dissemination, Reports and Publications ................................................................... 5
3. Illinois State Cancer Registry .................................................................................................................................. 6
3.1 Review and Evaluation of Fiscal Year 2018 Goals ..................................................................................... 6
3.1.1 Maintain Completeness and Timeliness of Reporting of Cancer Incidence Cases to the Illinois State
Cancer Registry......................................................................................................................................... 6
3.1.2 Maintain and Enhance Activities Related to Physician and Pathology Reporting .................................... 6
3.1.3 Provide Training for Reporting Facilities and for Central Registry Staff ................................................... 7
3.1.4 Ensure Data Quality.................................................................................................................................. 7
3.1.5 Maintain Data Use Activities .................................................................................................................... 8
3.1.6 Provide Adequate Program Management ............................................................................................... 9
3.2 Fiscal Year 2018 Major Accomplishments ................................................................................................ 9
3.2.1 North American Association of Central Cancer Registries Gold Certification .......................................... 9
3.2.2 National Program of Cancer Registries (NPCR) Registry of Excellence .................................................... 9
3.2.3 Collaboration with State and National Organizations .............................................................................. 9
3.2.4 Quality Control Reports.......................................................................................................................... 10
3.3 Goals for Fiscal Year 2019....................................................................................................................... 11
3.3.1 Maintain Completeness and Timeliness of Reporting of Cancer Incidence Cases to the Illinois State
Cancer Registry....................................................................................................................................... 11
3.3.2 Maintain and Enhance Activities Related to Physician and Pathology Reporting .................................. 11
3.3.3 Provide Training for Reporting Facilities and for Central Registry Staff ................................................. 12
3.3.4 Ensure Data Quality................................................................................................................................ 12
3.3.5 Maintain Data Use Activities .................................................................................................................. 12
3.3.6 Provide Adequate Program Management ............................................................................................. 13
4. Adverse Pregnancy Outcomes Reporting System ................................................................................................ 14
4.1 Review and Evaluation of Fiscal Year 2018 Goals ................................................................................... 14
4.2 Fiscal Year 2018 Major Accomplishments .............................................................................................. 16
4.2.1 Cooperative Agreement with the U.S. Centers for Disease Control and Prevention (CDC) ................... 16
4.2.2 Cooperative Agreement with the March of Dimes (MOD) .................................................................... 17
4.2.3 Enhancement of the APORS Database ................................................................................................... 17
4.2.4 Improved Birth Defects Surveillance ...................................................................................................... 17
4.2.5 Evaluation of Case Management Services Provided to APORS Cases .................................................... 18
4.2.6 Linkages with Other Programs and Activities......................................................................................... 18
4.2.7 Quality Control Reports.......................................................................................................................... 20
4.3 Goals for Fiscal Year 2019....................................................................................................................... 21
5. Occupational Disease Registry ............................................................................................................................. 23
5.1 Adult Blood Lead Registry (ABLR) ........................................................................................................... 23
5.1.1 Fiscal Year 2018 Accomplishments ........................................................................................................ 23
5.1.2 Interventions Resulting From ABLR Notifications of Elevated Lead Results .......................................... 23
5.1.3 Goals for Fiscal Year 2019 ...................................................................................................................... 23
5.2 Census of Fatal Occupational Injuries and Illnesses (CFOI) ..................................................................... 24
5.2.1 Review and Evaluation of Fiscal Year 2018 Goals .................................................................................. 24
Annual Report July 2017 - June 2018
Table of Contents ii
5.2.2 Goals for Fiscal Year 2019 ...................................................................................................................... 24
5.3 Survey of Occupational Injuries and Illnesses (SOII) (formerly Occupational Safety and Health Survey) 25
5.3.1 Review and Evaluation of Fiscal Year 2018 Goals .................................................................................. 25
5.3.2 Survey Process and Achievements for Fiscal Year 2018......................................................................... 25
5.3.3 Goals for Fiscal Year 2019 ...................................................................................................................... 25
6. Hazardous Substances Registry ............................................................................................................................ 26
6.1 Geocoding Process and Accomplishments .............................................................................................. 26
6.1.1 Geocoding Cancer and Birth Defects Data ............................................................................................. 26
Table 6.1.1.1 Percentage of IHHSR Reports with Complete Geocoding as of November 2017 ........................... 27
6.2 Goals for Fiscal Year 2018....................................................................................................................... 27
7. Cluster Inquiries and Assessments ....................................................................................................................... 27
7.1 Review and Evaluation of Fiscal Year 2018 Goals ................................................................................... 27
7.2 Fiscal Year 2018 Accomplishments ......................................................................................................... 27
7.3 Fiscal Year 2019 Objectives .................................................................................................................... 28
8. Research Program ................................................................................................................................................ 29
8.1 Fiscal Year 2018 Major Accomplishments .............................................................................................. 29
8.1.1 Provision of Epidemiologic Support to IDPH Committees and Workgroups .......................................... 29
8.1.2 Provision of Peer-Review Service to Scientific Publication .................................................................... 29
8.1.3 Provision of Epidemiologic Supervision and Tutoring ............................................................................ 29
8.1.4 Publication of the Department-wide Illinois Morbidity and Mortality Bulletin (IMMB) ........................ 29
8.1.5 Technical Assistance ............................................................................................................................... 29
8.1.6 IDPH Institutional Review Board ............................................................................................................ 30
8.2 Scientific Publications in Fiscal Year 2018 ............................................................................................... 30
8.3 Other Recent Reports or Publications That Used Registry Data .............................................................. 30
8.4 Epidemiologic Report Series ................................................................................................................... 32
8.5 Fiscal Year 2018 Presentations by IDPH Division of Epidemiologic Studies Staff ..................................... 34
8.6 Research Data Release and Collaborations ............................................................................................ 37
9. Grants ................................................................................................................................................................... 39
9.1 Funded Grants ....................................................................................................................................... 39
9.1.1 Survey of Occupational Injuries and Illnesses in Illinois (formerly Occupational Safety and Health
Survey) ................................................................................................................................................... 39
9.1.2 Census of Fatal Occupational Injuries in Illinois ..................................................................................... 39
9.1.3 Improvement of Birth Defects Surveillance Program ............................................................................ 39
9.1.4 National Cancer Prevention and Control Program ................................................................................. 39
9.1.5 Neonatal Abstinence Syndrome Surveillance ........................................................................................ 40
10. Cancer Reporting Facilities That Have Not Completed Reporting for the 2016 Diagnosis Year by July 1, 2017 .. 41
Annual Report July 2017 - June 2018
List of acronyms iii
Acronyms
Acronyms used in the Illinois Health and Hazardous Substances Registry Annual Report
ABLR
Adult Blood Lead Registry
ACS
American Cancer Society
AHRQ
Agency for Healthcare Research Quality
APORS
Adverse Pregnancy Outcomes Reporting System
BLS
Bureau of Labor Statistics (U.S. Department of Labor)
CDC
U.S. Centers for Disease Control and Prevention
CFOI
Census of Fatal Occupational Injuries
CINA
Cancer in North America
FY
Fiscal Year
GIS
Geographic Information System
IARC
International Agency for Research on Cancer
IBCCP
Illinois Breast and Cervical Cancer Program
ICCCP
Illinois Comprehensive Cancer Control Program
IDHFS
Illinois Department of Healthcare and Family Services
IDPH
Illinois Department of Public Health
IHDDI
Illinois Health Data Dissemination Initiative
IHHSR
Illinois Health and Hazardous Substance Registry
IMMB
IDPH’s Illinois Morbidity and Mortality Bulletin
IRB
Institutional Review Board
ISCR
Illinois State Cancer Registry
MMWR
CDC’s Morbidity and Mortality Weekly Reports
NAACCR
North American Association of Central Cancer Registries
NAD
North American Datum
NBDPN
National Birth Defects Prevention Network
NCI
National Cancer Institute
NIH
National Institutes of Health
NIOSH
National Institute of Occupational Safety and Health
NPCR
National Program of Cancer Registries
ODR
Occupational Disease Registry
OSH
Occupational Safety and Health Survey
OSHA
Occupational Safety and Health Administration
SEER
Surveillance of Epidemiology and End Results
SOII
Survey of Occupational Injuries and Illnesses
VA
Veteran’s Administration
VR
Division of Vital Records
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 1
1. Executive Summary
The Illinois Department of Public Health’s (IDPH) Division of Epidemiologic Studies is responsible
for developing and managing the Illinois Health and Hazardous Substances Registry (IHHSR).
The registry was created by the Illinois Health and Hazardous Substances Registry Act (410 ILCS
525/1 et seq.), enacted on September 10, 1984, and currently includes the following
components: the Illinois State Cancer Registry (ISCR), the Adverse Pregnancy Outcomes
Reporting System (APORS), the Occupational Disease Registry (ODR) [which further contains the
Adult Blood Lead Registry (ABLR), Census of Fatal Occupational Injuries (CFOI) and the Survey of
Occupational Injuries and Illnesses (SOII)], and a research and data dissemination section. This is
the registry’s 32nd annual report and it describes major registry activities and accomplishments
from July 2017 through June 2018 (FY18).
The mission of the IHHSR includes the following:
• collect and maintain statewide reports on the incidence of cancer, adverse pregnancy
outcomes, and occupational diseases and injuries;
• conduct epidemiologic analyses and health assessments at the state and local levels;
• provide a source of information for the public;
• monitor changes in incidence to detect potential public health problems, trends, and
progresses;
• use data to help target intervention resources for communities, patients, and their
families;
• inform health professionals and citizens about risks, early detection, and treatment of
cancers in their communities; and
• promote high quality research to provide better information for disease prevention and
control.
1.1 Illinois Health and Hazardous Substances Registry (IHHSR) Goal
The basic goal of the registry, according to the Act, is to develop and to maintain a
unified system for the collection and compilation of statewide information on cancer
incidence, adverse pregnancy outcomes, occupational diseases and injuries, and
hazardous exposures; for correlation and analysis of information on public health
outcomes and hazardous substances; and to use this information in decision making and
public health policy development.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 2
1.2 Fiscal Year 2018 Highlights
• Received $1.53 million from federal funds and nearly $33,000 from other non-general
revenue sources, mostly through competitive processes, to support activities of the
IDPH Division of Epidemiologic Studies
• Collected detailed case reports on Illinois residents with 68,549 newly diagnosed cancer
cases (2015), 11,417 children with adverse pregnancy outcomes (2015), 2,461 adult lead
poisoning cases (2017), 33,170 representative non-fatal occupational disease and injury
sample records (2016), and 171 fatal occupational injuries (2016)
• Responded to 15 requests for general information about the registry, 33 requests for
epidemiologic reports and registry data, and 19 special data requests or collaborations
from outside researchers
• Responded to nine inquiries about perceived cancer excesses in local communities and
neighborhoods
• Prepared and submitted five grant proposals to support the registry’s operations and
research
• Released one research paper in the Illinois Morbidity and Mortality Bulletin, eight
reports in the Epidemiologic Report Series, and prepared six written reports for quality
control studies of registry data
• Authored or co-authored four scientific papers for peer-reviewed journals
• Data released by the registry were used in 19 published studies by outside researchers
• Actively participated in national and statewide health programs; provided data,
information, and epidemiologic support as needed
• Referred Illinois children with adverse birth outcomes to programs that provide follow-
up services
• Referred seven employees from seven employers with elevated blood lead levels to the
U.S. Occupational Safety and Health Administration (OSHA) for onsite inspection
• Delivered presentations at ten professional meetings
• Provided leadership and management support to IDPH Institutional Review Board (IRB),
with two Division of Epidemiologic Studies staff serving as members, one as vice chair,
and one as the IRB's standing coordinator
• On behalf of IDPH, reviewed, edited, and published the Illinois Morbidity and Mortality
Bulletin (IMMB) which features scientific articles based on analyzing Illinois data
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 3
1.3 Illinois Health and Hazardous Substances Registry Coordinating Council
The IHHSR Act included that the Health and Hazardous Substances Coordinating Council
should be comprised of the following persons, ex officio or their designees: Dean of the
School of Public Health of the University of Illinois at Chicago, the Directors of the Illinois
departments of Agriculture, Labor, Natural Resources, Nuclear Safety (now part of the
Illinois Emergency Management Agency), Public Health, and of the Illinois
Environmental Protection Agency. Due to time and budgetary constraints, the Council
did not have a face-to-face meeting in fiscal year 2018. Instead, the Council reviewed
and approved the annual report via written ballot.
1.4 Goals for Fiscal Year 2019
1. Continue to collect complete, timely, and quality data to monitor disease
distributions and trends among Illinois residents
2. Engage partners, stakeholders, and communities in data dissemination and
utilization to support health research and programs
3. Respond to public concerns about disease clusters in Illinois with registry data
and information
4. Conduct activities stipulated or required by federal cooperative or research
grants
5. Pursue grants and other funding opportunities in order to sustain and enhance
the Division of Epidemiologic Studies' programs
6. Conduct epidemiologic studies with registry data to provide information to the
public health community and to policy makers
7. Provide epidemiological data and information to federal, state, and local health
education and intervention programs
8. Work through the Division of Epidemiologic Studies Program Review and IDPH's
Institutional Review Board (IRB) to provide researchers with high-quality and
timely registry data to support research advancing scientific knowledge and
improving public health
9. Provide health regulatory agencies with health surveillance information to
enhance their intervention and regulatory programs and to improve public
health and safety
10. Participate in national registry certification and data submission activities to
maintain the registry’s certification status and data utilization.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 4
2. Program Data
Tables 2.1 and 2.2 summarize the registry’s data collection and dissemination activities for last year
compared with data from the previous years. In order to be consistent with the common reporting
schedule, numbers in Table 2.1 are expressed in calendar years during which cases were diagnosed or
defined. There is normally a two-year time delay for cases being reported to IHHSR. Due to the dynamic
nature of the registry databases, the numbers in the table may not be the same as previously reported.
These numbers represent cases processed or estimated by the registry and they do not reflect rate
calculations that would require population denominators, nor case completeness that would require
independent evaluations. Projections or forecasts for the future year also are included.
Table 2.1 Registry Data Collection
Calendar 2012
Calendar 2013
Calendar 2014
Calendar 2015 Calendar 2016
ISCR Invasive Neoplasms
(including bladder in situ)
65,763
66,228
67,635
68,549
59,544
1
Breast in situ female only
2,547
2,580
2,477
2,456
2,317
1
Brain – benign/borderline
2,294
2,320
2,456
2,321
1,861
1
APORS Cases – All
NBDPN Children
# NBDPN Birth Defects
12,101
2,519
3,327
9,741
2
2,332
3,424
10,411
2,629
3,754
11,417
3,276
4,427
12,429
2,397
3
2,746
3
3,200
Occupational Disease Reports
ABLR lead poisoning
New reports
Total reports
484
726
623
4
2,161
4
1,060
2,347
1,704
3,056
852
2,918
770
5
5
Occupational Fatality Cases
Injuries
146
146
176
176
164
164
172
172
171
171
173
Occupational Safety and Health
Survey
6
Estimated Cases based on
Sampling
Sprains, strains
Bruises, contusions
Cuts, lacerations
Fractures
Multiple injuries
Carpal tunnel syndrome
Heat burns
Tendonitis
Amputations
Chemical burns
39,630
14,610
3,350
3,510
3,070
830
590
590
80
190
120
38,690
13,580
3,110
3,170
3,340
790
380
380
200
260
180
38,280
14,320
2,880
2,600
4,010
1,450
270
310
70
160
60
39,700
15,309
3,255
3,613
4,405
715
238
596
38
199
238
33,170
11,940
2,580
2,810
3,070
420
290
530
70
300
60
36,400
13,600
2,920
3,210
3,740
925
265
560
70
250
150
Hazardous Substances (GIS)
Geocoding registry cases
All
All
All
All
All
1
Reporting is not complete for the calendar year indicated. The numbers are estimated based on the current projected incidence.
2
The numbers for 2013 are lower because APORS case definition changed in 2013 and a new reporting mechanism was
introduced. It took a while for hospital staffs to adjust to the changes.
3
To date 8/16/18 – data are not complete
4
IHHSR Rule change to lower threshold for reporting cases of elevated adult lead levels to mirror the federal requirements from
≥25µg/dL to ≥10µg/dL.
5
Actual counts for 2017
6
Private industries only, cases with days away from work include those that result in days away from work with or without job
transfer or restriction.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 5
Table 2.2 Registry Data Dissemination, Reports and Publications
FY14
FY15
FY16
FY17
FY18
Estimated
FY19
Data Requests
General information 31
27
23
39
15
20
Data and reports 71
77
59
32
33
30
Cluster inquiries
21
22
8
6
9
8
Confidential data released and
research collaborations
25
23
17
22
19
15
Confidential data applications
4
4
1
0
0
5
Quality Assurance Studies
Casefinding visits
APORS
70
1
22
4
4
4
1
ISCR
120
74
31
51
69
75
Cases added from casefinding visits
APORS
2
4,493
8,350
3
7,158
9,729
4
13,703
ISCR
5
1,089
856
683
1,142
1,182
1,200
External audits of facility data
ISCR
179
204
229
244
0
0
Internal quality control reports issued
APORS
3
6
3
2
4
4
ISCR
4
3
3
3
2
3
ABLR
0
0
1
0
0
0
Public Use Microdata Files
3
5
5
5
5
5
Publications
Epidemiologic report series
4
7
6
8
8
6
IMMB and other publications
0
0
3
2
1
1
Peer-reviewed publications
1
2
5
2
4
3
Publications by outside researchers
22
16
21
18
19
18
Oral/poster presentations
10
8
5
7
10
Grant Proposals Funded
5
5
5
7
5
5
1
Fewer hospital casefinding visits have been conducted since FY14 because field staff access medical records
remotely for almost all reporting hospitals.
2
Represents additional birth defects identified and confirmed through the active case verification process
where the medical records or previously submitted cases are reviewed.
3
Represents additional birth defects added from review of children identified from past years from a variety
of data sources, and improved abstractor case finding.
4
The APORS program has been doing additional chart review on infants born in 2015, 2016, and 2017 with
zika-associated birth defects in collaboration with the U.S. Zika Birth Defects registry.
5
Represents cases missed by hospital reporting, but identified by ISCR during casefinding visits.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 6
3. Illinois State Cancer Registry
As the only population-based source for cancer incidence information in Illinois, the Illinois State
Cancer Registry (ISCR) collects cancer cases through mandated reporting by hospitals,
ambulatory surgical treatment centers, non-hospital affiliated radiation therapy treatment
centers, independent pathology labs, physicians, and through the voluntary exchange of cancer
patient data with 11 other states. For the 2015 diagnosis year, ISCR received reports from three
Veteran’s Administration (VA) facilities in Illinois.
ISCR continues to require reporting facilities to submit cases in an electronic format. There are
currently 187 reporting hospitals in Illinois and all are reporting electronically. Dermatologists
and pathology labs have been set up with access to a web-based reporting system. Ambulatory
centers and radiation therapy centers use either the free Abstract Plus reporting software or the
Internet-based Web-Plus program.
3.1 Review and Evaluation of Fiscal Year 2018 Goals
3.1.1 Maintain Completeness and Timeliness of Reporting of Cancer
Incidence Cases to the Illinois State Cancer Registry
• Met NAACCR gold certification standard for complete, accurate, and timely data
for the 20
th
consecutive year
• Maintained case reporting at all non-federal facilities by conducting 69 facility
case finding visits for the 2016 diagnosis year; 1,182 missed cases were
identified
• Completed interstate data exchange by transmitting 3,582 de-duplicated, edited
state-specific cases to 11 states and received and processed 10,253 cases from
ten states
• Completed death clearance for the 2015 death year and maintained a death
certificate only rate of 2.2 percent. In total, 2,939 cancer diagnoses were
followed with 326 letters or lists mailed to hospitals, physicians, nursing homes,
and hospice centers
• Added 90 percent of cases for the 2016 diagnosis year to the ISCR database by
December 2017
• Added 100 percent of cases for the 2015 diagnosis year to the ISCR database by
December 2017
3.1.2 Maintain and Enhance Activities Related to Physician and Pathology
Reporting
• Maintained reporting by physicians and pathology labs
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 7
• Expanded reporting by physicians in Illinois by 28.7 percent through focused
targeting and training
3.1.3 Provide Training for Reporting Facilities and for Central Registry Staff
• Provided basic training by entering into a limited, six-month personal services
contract with the North American Association of Central Cancer Registries
(NAACCR) to provide four basic training sessions, four advanced training
sessions, four staging training sessions, and five workshops designed solely for
dermatologists reporting melanoma; these onsite training sessions were
presented in the spring of 2018 in central, southern, and northern Illinois; the
trainer position (required by the National Program of Cancer Registries (NPCR))
has not been filled
• Provided on demand access to a SEER Summary Staging training webinar
available to all cancer reporters across the state
• Provided on demand access to a nine-part "Introduction to Cancer Reporting"
webinar training series available to all cancer reporters across the state
• Provided individual phone or e-mail support for 2,485 requests related to
technical support and reporting issues
• Attended the national educational conferences of the National Cancer
Registrar’s Association and the NAACCR
• Attended the annual educational conference sponsored by the Cancer
Registrars of Illinois in September 2017
• Provided access to 97 advanced training workshops for 235 reporters via
WebEx® utilizing nationally developed advanced training materials
• Provided limited individual training by the quality control field staff at 25
facilities
• Provided ongoing educational opportunities for central registry staff through
participation in 12 nationally broadcast education webinars
• Provided additional educational opportunity to central registry staff through a
one day coding in-service workshop utilizing National Cancer Registrar
Association case studies and workbooks.
3.1.4 Ensure Data Quality
• Maintained a duplicate rate of fewer than one per 1,000 primary cases
• Met NPCR/NAACCR standards for data quality
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 8
• Applied GenEDITS metafiles to the ISCR database and ran all standard-setter
required edits and performed reconciliation for identified errors
• Matched vital records death data to the ISCR database to update unknown
values in the latter; Race codes: of 22,105 cases with an unknown or missing
race, 562 (2.5 percent) cases were matched and updated with a valid race;
Maiden name: 21,982 cases (4.7 percent) were matched and updated with valid
maiden names; Hispanic origin: 392 cases, or 4.0 percent, were matched and
updated with valid data element codes for Hispanic origin; Birthplace: of
559,364 cases with unknown or missing birthplace, 43,287 cases (7.7 percent)
were matched and updated with a valid birthplace; Death variable information
also was updated
• Added census tract information to the cancer database; All records were
geocoded using MapMarker® Version 30; 92.5 percent of the addresses were
geocoded to an address specific level
• Ensured override flags were within the NPCR average by reviewing the NPCR
Data Evaluation Reports revealing that the percentage of override flags in the
ISCR submission file were lower for all associated edits than the NPCR median
3.1.5 Maintain Data Use Activities
• Produced annual cancer statistics, including the public use data file, annual state
cancer report, annual county cancer report, and updated the cancer query
system
• Provided general cancer information for cancer inquiries
• Provided data for the Illinois Comprehensive Cancer Control Program (ICCCP)
• Provided data for the Illinois Breast and Cervical Cancer Program (IBCCP)
• Formed the Illinois Cancer Coalition in conjunction with the ICCCP and IBCCP to
foster collaboration, cooperation, and data-driven practices among programs
within the Illinois Department of Public Health that impact cancer prevention
and control
• Performed data linkage with the IBCCP file and provided the required
information back to the IBCCP program
• Produced one publication for the layperson on cancer in Illinois
• Produced one epidemiologic report
• Produced two quality control reports
• Updated incidence projections
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 9
• Submitted 1,424,834 cases to NPCR and NAACCR for the 1995-2015 call for data
• Submitted 65,525 cases to NPCR for the 2016 diagnosis year call for data
3.1.6 Provide Adequate Program Management
• Kept registry staff informed of grant progress, standards changes, and reporting
issues through monthly staff meetings
• Monitored registry operations activities to meet grant objectives via an
electronic tracker, and streamlined registry operations through more efficient
use of staff and resources
3.2 Fiscal Year 2018 Major Accomplishments
3.2.1 North American Association of Central Cancer Registries Gold
Certification
For the 20
th
consecutive year, ISCR has been recognized as having met the gold
standard – the highest standard for registry certification. To be awarded this
honor, a registry must have 95 percent or better completeness of case
ascertainment; 98 percent validity of information recorded for selected data
variables (age, sex, race and state/county); death-certificate only cases less than
three percent; duplicate primary cases fewer than one per 1,000; 100 percent of
the records passing the NAACCR EDITS without error; and data submissions
within 24 months of the close of the accession year.
3.2.2 National Program of Cancer Registries (NPCR) Registry of Excellence
For the 5
th
consecutive year, ISCR has been recognized as a Registry of
Excellence by the U.S. Centers for Disease Control’s National Program of Cancer
Registries – their highest standard for registry certification. To be awarded this
honor, a registry must have met all CDC NPCR standards for data completeness
and quality. ISCR is one of 16 states to receive this designation.
3.2.3 Collaboration with State and National Organizations
3.2.3.1 Illinois Comprehensive Cancer Control Program - Illinois
Department of Public Health (IDPH)
IDPH has implemented the Comprehensive Cancer Control State Plan,
which identified cancer prevention and control priorities for Illinois.
Several Division of Epidemiologic Studies staff provided technical and
operational support for the program through committee
participation.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 10
3.2.3.2 Vital Records – Illinois Department of Public Health
Death certificate data from the IDPH Division of Vital Records (VR) are
matched with the registry database on an ongoing basis. Follow-back
is performed on non-matched cancer cases and death information is
added to matched cases. Death information available from the VR
death file also is used to populate an Internet-based death query
system that is accessible through password and ID. This system is
used by hospital-based cancer registrars to obtain follow-up
information on cancer patients seen at their facilities.
The VR death file also contributes to the data quality and item-specific
completeness of the ISCR database through a matching protocol.
Known information from the VR death file is imported into the ISCR
database (when unknown on the ISCR database) for the following
variables: race, birthplace, Hispanic origin, and maiden name.
3.2.3.3 North American Association of Central Cancer Registries (NAACCR)
ISCR provided comprehensive data from 1995-2015 to NAACCR in
response to the call for data and registry certification process. The
data were used to support research and generate cancer descriptions
in North America publications. Staff also participated in various
NAACCR committees and workgroups, contributing knowledge and
expertise to this volunteer organization.
3.2.3.4 U.S. Centers for Disease Control (CDC) National Program of Cancer
Registries (NPCR)
ISCR submitted comprehensive data from 1995-2015 to the CDC NPCR
call for data. All malignant tumors, whether in situ or invasive, were
included. The annual submission satisfies the program requirements
for reporting registry progress to CDC and contributes information to
the national cancer surveillance effort.
3.2.3.5 Illinois Breast and Cervical Cancer Program (IBCCP)
ISCR provided data support for this state and federally-funded
program, which focuses on developing comprehensive education,
outreach, and screening for breast and cervical cancer.
3.2.3.6 American Cancer Society (ACS)
Illinois statewide cancer incidence and mortality data were provided
to ACS for its production of Illinois Cancer Facts and Figures. Registry
staff regularly attend ACS activities in the area of data and
epidemiology. The collaboration is ongoing.
3.2.4 Quality Control Reports
3.2.4.1 Parrish P. Assessment of Duplicate Records for 1995-2015 Diagnosis
Years. Quality Control Report Series 17:06. Springfield, Ill.: Illinois
Department of Public Health, November 2017.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 11
3.2.4.2 Hebert L. Linking Illinois State Cancer Registry Records with Vital
Records Death Master File to Enhance Data Completeness. Quality
Control Report Series 17:07. Springfield, Ill.: Illinois Department of
Public Health, October 2017.
3.3 Goals for Fiscal Year 2019
3.3.1 Maintain Completeness and Timeliness of Reporting of Cancer
Incidence Cases to the Illinois State Cancer Registry
• Perform facility casefinding for the 2017 diagnosis year at selected reporting
facilities in Illinois and track identified missed cases to ensure reporting
• Maintain interstate data exchange and complete exchanges by November 2018
• Continue death certificate clearance and maintain death certificate only rate of
less than three percent
• Achieve 90 percent case reporting for the 2017 diagnosis year by December
2018
• Achieve 95 percent case reporting for the 2016 diagnosis year by December
2018
3.3.2 Maintain and Enhance Activities Related to Physician and Pathology
Reporting
• Maintain contact with existing physician offices for reporting and training
(n=145)
• Maintain contact with existing pathology labs for reporting and training (n=12)
• Expand reporting of physician offices in Illinois by identifying offices, training
personnel, and implementing reporting for those not currently submitting cases
to ISCR
• Perform facility case finding and implement any additional training needed at
newly reporting physician offices in Illinois
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 12
3.3.3 Provide Training for Reporting Facilities and for Central Registry Staff
• Contract with NAACCR education staff to provide five basic training workshops,
three advanced training workshops, and three staging training workshops
• Develop, update, and maintain new cancer reporting training website for all
Illinois Cancer reporters
• Provide individual phone support for technical and operational issues from
cancer incidence reporters and reporting facilities
• Provide monthly advanced training workshops via the Web, utilizing established
seminars
• Provide on-demand basic training webinars for cancer reporting
• Provide on-demand staging training webinars for cancer reporting
• Provide ongoing educational opportunities for central registry staff through
webinars and attendance at relevant regional and national association and grant
meetings
• Update membership status in national associations
3.3.4 Ensure Data Quality
• Maintain duplicate rate of less than 0.01 percent using Link Plus to review
submissions for duplicate tumor reports and apply NAACCR duplicate protocol
• Meet NPCR/NAACCR standards for data quality and override flags
• Perform gender verification using established ISCR procedure
• Apply NPCR, NAACCR and Illinois-specific GenEDITS metafiles to ISCR database
for reconciliation of inter- and intra-record inconsistencies
• Update ISCR unknown variables by linking to the IDPH's death file
• Geocode all records on the ISCR database
• Update case vital status via linkage with the National Death Index
3.3.5 Maintain Data Use Activities
• Produce public use data set file, annual state and county report file, update
cancer query system, and produce annual report of incidence rates by local
community. Provide data visualization tools on ISCR website to facilitate
understanding and access to state and local cancer data.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 13
• Respond to cluster inquiries
• Provide data and support for IBCCP and ICCCP
• Perform linkage with IBCCP and update data files
• Produce one epidemiologic report
• Produce a publication for the layperson on cancer in Illinois
• Perform linkage with Indian Health Services and update code for Native
American race
• Process applications for confidential data
• Update incidence and mortality projections
• Submit the 1995-2016 NPCR/NAACCR file for combined call for data and submit
the 2017 data file for NPCR call for data
3.3.6 Provide Adequate Program Management
• Hold monthly staff meetings
• Monitor grant activities
• Update advisory committee on grant progress and activities
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 14
4. Adverse Pregnancy Outcomes Reporting System
The Adverse Pregnancy Outcomes Reporting System (APORS) collects information on Illinois
infants and young children born with birth defects or other abnormal conditions. The purpose
of APORS is to conduct surveillance on birth defects, to guide public health policy in the
reduction of adverse pregnancy outcomes, and to identify and refer children who require special
services in order to correct and prevent developmental problems and other disabling conditions.
Mandated statewide data collection began in August 1988. Licensed Illinois hospitals are
required to report adverse pregnancy outcomes to APORS. In addition, APORS receives reports
from four hospitals in St. Louis that are part of the southern Illinois perinatal network.
APORS cases meet one or more of the following criteria:
• the infant is diagnosed prior to hospital discharge as having a positive drug toxicity for
any drug; shows signs and symptoms of drug toxicity or withdrawal; or the mother
admits to illegal drug use (except cannabis) during the pregnancy;
• the infant or young child (younger than two years of age) is diagnosed with a congenital
anomaly; a congenital infection; an endocrine, metabolic, or immune disorder; a blood
disorder; or another high-risk medical condition;
• the infant was born at 31 completed weeks of gestation; or
• a neonatal or fetal death has occurred.
4.1 Review and Evaluation of Fiscal Year 2018 Goals
Improve Casefinding
• Ninety-four (77.0 percent) of the 122 birth facilities that are part of the Illinois Perinatal
Network have been trained on and are using the APORS database introduced in FY14;
More than 87 percent of cases are reported to APORS electronically. The database
automatically generates APORS case reports for newborns who are premature (≤30
completed weeks); are part of triplet or higher order births; who have a serious
infection, birth defect, or seizures marked on the birth certificate; or who die before the
birth certificate is filed
• Training in APORS reporting continued through formal trainings, webinars, use of the
SharePoint® site for hospital staff, computer-based trainings, conversations with
hospital staffs, and responses to questions. The three-year training plan is ongoing.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 15
• Made 13 trainings in person, by phone, or webinar and held 1,567 consultations via
telephone or e-mail with Illinois hospitals to improve APORS reporting
• Updated Sharepoint® site with revised manuals and appendices, and the most recent of
the quality control reports; reminders are posted when patterns of problems are
identified
• Received two hospital discharge data files covering all hospitals containing data for
children as old as two years of age—These data have been imported into the IDPH chart
review database. An additional 67 children born in 2015, 367 born in 2016, and 993
born in 2017 were identified as possible APORS birth defect cases
• Reviewed the medical records of 2,132 infants identified from hospital discharge data;
on average, 65.3 percent of the cases were found to have conditions that meet the
APORS review criteria
• Reviewed charts of 142 mothers who experienced a fetal death associated with a
congenital anomaly on the fetal death certificate, to verify the information on the
certificate. Of the reviewed charts, 83.8 percent were confirmed to be cases meeting
the APORS case criteria.
• Began case finding at genetic clinics.
Improve Quality of APORS Data
• Evaluated the timeliness of hospital reporting for cases reported in January through
December 2017; provided hospital-specific feedback and used results to identify
hospital training needs. In 2017, 75.5 percent of hospitals met the APORS timeliness
standard of reporting cases within seven days of infants’ hospital discharge. This is a big
improvement over the previous year (63.4 percent). Hospitals are notified twice yearly
of their timeliness status and provide more intensive education to facilities that are non-
compliant.
• Evaluated the rates of hospital reporting in 2015 and 2016. In 2015, the case reporting
rates ranged from 0.0 to 18.4 percent with the average being 5.7 percent, while in 2016,
the case reporting rates ranged from 0.3 to 21.3 percent with the average being 6.3
percent. This degree of variation is not unexpected, since hospitals providing the
highest level of care have the most cases to report.
• Hospitals are contacted if a report is incomplete, or is internally contradictory. These
contacts are used as training opportunities when appropriate. If hospital staffs are
unaware that reports have been automatically generated by the APORS database,
APORS staff notifies them and asks for the reports to be completed.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 16
Improve Program Effectiveness
• In addition to the Sharepoint® site updates of revised manuals, appendices, and quality
control reports, hospitals and local health departments can access the forms to request
additional materials
• Ten fact sheets on specific birth defects were maintained on the IDPH website.
• Avoided the need to travel to 121 of the 122 birth facilities, either by accessing
electronic medical records remotely, or having the facilities send charts (in electronic or
paper format). APORS staff have finished reviewing older cases at the last hospital
needing travel, and it will not need to visit the facilities again, unless a few older cases
are identified late.
• Maintained linkages with key organizations, such as the Illinois perinatal networks and
the National Birth Defects Prevention Network, and provided data to these
organizations for use in their efforts to promote birth defect prevention
• The APORS program worked with IDPH, state, and local programs to assure the ongoing
provision of perinatal services for high risk infants
• A surveillance report examining the trends of birth defects in Illinois was published
• Was awarded a renewed CDC cooperative agreement to do birth defect surveillance;
closed out a CDC cooperative agreement to perform rapid case ascertainment of birth
defects associated with the Zika virus since funding was no longer available; and has
almost completed the data collection for the one-year award through March of Dimes
to undertake improved surveillance of neonatal abstinence syndrome (NAS) in
collaboration with Dr. Amanda Bennett from the Office of Women’s Health and Ashley
Horne, CSTE Fellow.
• Continued to provide Zika-associated birth-defect data to CDC. APORS will continue
collecting this information until the 2016 and 2017 birth cohorts are completed.
4.2 Fiscal Year 2018 Major Accomplishments
4.2.1 Cooperative Agreement with the U.S. Centers for Disease Control and
Prevention (CDC)
APORS was approved for the third year of a four-year cooperative agreement
with the CDC to enhance Illinois birth defects surveillance, prevention and
service referral. Funding for 2017 and 2018 is $210,000 each year.
APORS closed out the CDC cooperative agreement to do rapid birth defect
surveillance of defects potentially associated with the Zika virus (primarily brain
and nervous system anomalies) since CDC did not have funds to support the
planned five-year project.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 17
4.2.2 Cooperative Agreement with the March of Dimes (MOD)
APORS collected information about drug-exposed infants and their mothers
under a one-year agreement with the MoD to enhance Illinois Neonatal
Abstinence Syndrome (NAS) surveillance. Funding for FY18 was $71,966. The
analysis will be taking place over the next year.
4.2.3 Enhancement of the APORS Database
APORS staff completed modifications to the APORS database to accommodate
the fields needed to document the rapid Zika ascertainment. In addition,
changes were initiated to contain information collected by the abstractors
during chart review. These changes will be completed in the next fiscal year.
All local health departments are using the APORS database introduced in FY14;
and 94 hospitals are registered. These hospitals report more than 87 percent of
the cases received by APORS.
4.2.4 Improved Birth Defects Surveillance
Hospital-reported cases are a starting point for birth defect surveillance.
Potential birth defect cases were sent electronically to regional field staff
members, who then reviewed the infants’ medical charts, verified the presence
of birth defects, eliminated false positives, and collected additional diagnoses.
In FY18, the abstractors reviewed 9,980 birth defects reported by hospitals. The
table shows the disposition of the conditions reviewed by the APORS staff.
Source
Reported
Confirmed
Deleted
Hospital Nursery Reporting
6,729
4,270
2,459
Hospital Discharge Data
3,251
1,933
1,318
Chart Review
0
13,702
0
Other
1
71
69
2
Any Source
9,605
19,974
3,777
Abstractors deleted 746 reported birth defects that could not be found in the
charts, or that had been ruled out by the facility. Another 2,557 were not
collected because the infant did not have a collected birth defect or because the
birth defect did not meet specific criteria (often conditions that are considered
normal in a premature infant). Some conditions were deleted because they
were included as parts of confirmed complex conditions (410).The remaining 64
conditions were deleted for other reasons.
Case abstraction for 2015 birth cohort was completed in April 2017. The goal is
to be complete within two years of the birth year. This year was slower as a
new staff member was trained and the Zika surveillance continued.
Abstractors continued to prioritize chart review for infants reported with
microcephaly in response to Zika virus concerns. They began collection of
additional information, such as head circumference, length, and weight
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 18
measurements for infants with Zika virus-related birth defects. Most of these
charts are being reviewed within 60 days of delivery.
4.2.5 Evaluation of Case Management Services Provided to APORS Cases
APORS collaborated with community health agencies (CHA's) in surveying
APORS families offered or receiving case-management services through the
High-risk Infant Follow-up Program. CHA’s have documented outcomes in 75.7
percent of the cases referred in FY19. Some families (16.2 percent) could not be
contacted or live in an area where services are not available. Among the
families with surviving newborns and documented outcomes who were offered
services, 49.0 percent accepted.
4.2.6 Linkages with Other Programs and Activities
4.2.6.1 Perinatal Programs
4.2.6.1.1 Illinois Department of Human Services High-risk Infant
Follow-up. APORS continued to identify infants for the
Illinois Department of Human Services (IDHS) perinatal
management and high-risk infant tracking program.
More than 10,000 (10,088) infants were referred for
local health department nurse visits. Physical and
psychological development monitoring and counseling
for parents are provided through the nurse visits.
Included are 46 children with neural tube defects,
whose families were referred for prevention counseling.
4.2.6.1.2 IDPH Division of Infectious Diseases. APORS identified
infants for the IDPH Division of Infectious Diseases’
sexually transmitted disease (133 newborns) and
perinatal hepatitis B programs (255 newborns), which
ensure infants with congenital syphilis and infants
prenatally exposed to or diagnosed with a hepatitis B
infection are offered services.
APORS continued working with the Division of
Infectious Diseases to monitor Zika virus-exposed
pregnant women and their babies. APORS collaborates
with local departments to report de-identified
information on neonates and infants at two, six, 12, and
24 months of age to the U.S. Zika Virus Pregnancy
Registry. The reports are linked to the maternal reports
submitted by the Division of Infectious Diseases.
The APORS Manager has been part of collaboration with
staff from throughout IDPH to revise and maintain the
Illinois Zika Virus Action Plan
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 19
4.2.6.1.3 IDPH Craniofacial Anomaly Program. Data on all
infants born with cleft lip and/or palate (197 newborns)
were supplied to the IDPH Division of Oral Health
Craniofacial Anomaly Program to ensure these infants
receive appropriate services at multidisciplinary clinics
throughout the state.
4.2.6.1.4 University of Illinois at Chicago Division of Specialized
Care for Children (DSCC). APORS refers newborns to
the DSCC for free diagnostic services and assistance
with medical treatment. The infants have, or are
suspected of having, a treatable chronic medical
condition. The conditions include orthopedic, visual,
auditory, craniofacial, heart, and urinary defects. In
FY18, APORS referred 4,070 cases.
4.2.6.1.5 Illinois Department of Human Services Early
Intervention Program (EI). APORS refers newborns to
the EI for free developmental services. The infants
have, or are suspected of having, a condition that will
impact their intellectual or physical development. The
conditions include brain, spinal, visual, auditory,
craniofacial, and chromosomal defects. In FY18, APORS
referred 1,861 cases.
4.2.6.1.6 IDPH’s Newborn Metabolic Screening (NMS) Program.
APORS refers newborns reported to the program with
possible metabolic conditions to IDPH's NMS Program.
This program assures children receive timely follow-up
for these severe conditions. Several children with
hypothyroidism previously unknown to the NMS
program have been identified.
4.2.6.1.7 Illinois Department of Children and Family Services
(DCFS). Data are being provided to DCFS on a monthly
basis through the IHFS data warehouse. The data are
pulled into individual eHealth Passports that travel with
children in DCFS custody as they move between
placements. This helps assure children receive the
services they need in a timely manner.
4.2.6.1.8 Illinois Department of Healthcare and Family Services.
APORS data are provided monthly to DHFS for inclusion
in the Enterprise Data Warehouse. This links APORS
surveillance data to case management and public aid
data. Before confidential APORS data can be accessed
by anyone outside the program, requests are reviewed
through the IDPH Division of Epidemiologic Studies'
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 20
centralized review process. Any concerns about the
application are then referred back to the researcher;
once these are addressed, the application is submitted
for IRB approval.
4.2.6.2
National Birth Defects Prevention Network (NBDPN)
APORS submitted data for the NBDPN's annual report. The APORS
manager, Jane Fornoff, served on the NBCPN data committee. She also
presented three times at two NBCPN annual meetings. The APORS data
manager, Theresa Sandidge, presented a poster at the annual meeting.
The abstractor liaison, Jodi Snow, served on the NBDPN data standards
committee and in two working groups.
4.2.6.3
Perinatal Networks
APORS maintained communications with the perinatal network
administrators to facilitate hospital reporting of APORS cases.
Timeliness for APORS reporting is used as one quality measure for
hospitals’ annual perinatal assessment. Administrators also were kept
notified about the need to provide remote access to electronic medical
records and the new APORS data system.
4.2.6.4
Pregnancy Risk Assessment Monitoring System (PRAMS)
The APORS manager served on the PRAMS Steering Committee. The
committee provided recommendations about the questions that should
be retained or dropped from the PRAMS questionnaire.
4.2.6.5 IPHA Epidemiology and Health Statistics Section
The APORS manager serviced on the IPHA Epidemiology and Health
Statistics Section. She contributed to the development of a proposed
policy resolution on Neonatal Abstinence Syndrome.
4.2.7 Quality Control Reports
4.2.7.1 Sandidge T. Rates of Hospital Reporting of Adverse Pregnancy Outcomes
in 2015. Quality Control Report Series 17:03. Springfield, Ill: Illinois
Department of Public Health, September 2017.
4.2.7.2 Sandidge T. Family Survey of Services Provided Through the High Risk
Infant Follow-up (HRIF) Program. Quality Control Report Series 17:04.
Springfield, Ill.: Illinois Department of Public Health, September 2017.
4.2.7.3 Sandidge T, Fornoff J. Timeliness Study – Hospital Reports of Adverse
Pregnancy Outcomes Received in 2017. Quality Control Report Series
18:01. Springfield, Ill.: Illinois Department of Public Health, January
2018.
4.2.7.4 Sandidge T. Rates of Hospital Reporting of Adverse Pregnancy
Outcomes in 2016. Quality Control Report Series 18:02. Springfield, Ill.:
Illinois Department of Public Health, June 2018.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 21
4.3 Goals for Fiscal Year 2019
Improve Casefinding
• Train and support hospitals in the use of the APORS database to ensure that cases
automatically generated by the database (premature infants, triplet, or higher order
births and those with birth defects marked on the birth certificate) are completed in a
timely manner
• Follow the three-year training plan to assure all hospitals receive ongoing training in
APORS reporting
• Provide consultation and training to supplement the three-year and self-directed
training for hospital nursing staff when indicated
• Enhance the SharePoint® site for hospital staff to include materials that supplement
face-to-face and telephone consultation and training offered by APORS staff
• Match information from periodic hospital discharge information reports to the APORS
newborn cases and identify potential birth defect cases
• Review medical reports of infants identified in hospital discharge matching to ascertain
and collect new birth defect cases
• Complete rapid case ascertainment of birth defects associated with Zika virus in the
2015, 2016, and 2017 birth cohorts
• Continue case finding at genetic clinics
Improve Quality of APORS Data
• Evaluate the accuracy of hospital reporting in terms of timeliness, completeness, and
accuracy; provide hospital-specific feedback and use results to identify hospital training
needs
• Evaluate the quality of the active case verification process in terms of timeliness and
accuracy, provide individual-specific feedback, and use results to identify staff training
needs
• Provide consultations and supplemental training to hospitals identified as problem
reporters in terms of timeliness, accuracy, or case completeness
• Evaluate the collection of data associated with prenatal drug exposure and withdrawal
symptoms
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Illinois Health and Hazardous Substances Registry 22
Improve Program Effectiveness
• Enhance SharePoint® sites for hospitals and community health agencies that contain
relevant reference and training materials for the different groups
• Maintain linkages with key organizations, such as the Illinois perinatal networks, the
Greater Illinois Chapter of the March of Dimes, and the National Birth Defects
Prevention Network
• Collaborate with IDPH, state, and local health programs to assure the provision of
perinatal services for high-risk infants
• Collaborate with CDC to provide data to the U.S. Zika Pregnancy Registry
• Produce statewide and county surveillance reports
• Monitor activities and accomplishments associated with meeting the goals and
objectives set forth in the CDC cooperative agreement
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 23
5. Occupational Disease Registry
The Occupational Disease Registry (ODR) has three components: the Adult Blood Lead Registry
(ABLR); the Census of Fatal Occupational Injuries (CFOI); and the Survey of Occupational Injuries
and Illnesses (SOII), formerly referred to as the Occupational Safety and Health Survey (OSH).
5.1 Adult Blood Lead Registry (ABLR)
ABLR collects data on all cases of elevated blood lead levels for adults 16 years of age
and older and notifies federal enforcement agencies to trigger inspections and/or
interventions. In 2012, the Illinois Administrative Code related to elevated blood lead
definition and collection was changed to reflect the new guidelines defining elevated
blood levels. Laboratories are now mandated to report levels ≥10 µg/dL. This program
was funded through a purchase order for data with the CDC's National Institute for
Occupational Safety and Health (NIOSH). In 2013, however, NIOSH canceled all
contracts to fund state programs that use fiscal year 2013 funds in accordance with the
Budget Control Act of 2011. Starting in 2014, due to lack of funding, ABLR staff only
recorded cases of ≥40µg/dL to refer employers who have employees with elevated
blood lead levels ≥40µg/dL to OSHA per the memorandum of understanding. Reports
for cases less than 40µg/dL were archived. In 2015, Division staff developed a new
Access database that automated the entry of electronic reports and streamlined the
manual data entry of paper reports. As a result, the backlog of 2014 electronic lab
reports and all of 2015's electronic lab reports were entered in FY15. Data collection
continues and in calendar year 2017, 2,461 new lab reports were added to the ABLR
database.
5.1.1 Fiscal Year 2018 Accomplishments
• Notified OSHA quarterly of any company that had employees with elevated
blood lead levels ≥40 µg/dL of blood
• Notified OSHA within 24 hours of any case with an elevated blood lead level
≥60 µg/dL
5.1.2 Interventions Resulting From ABLR Notifications of Elevated Lead
Results
In calendar year 2017, ABLR made seven referrals (employees) to OSHA for
seven companies with employees who had blood lead levels greater than or
equal to 40 µg/dL of blood. OSHA conducted one safety inspection in Illinois
because of the ABLR referrals. During this inspection, 31 citations of OSHA rules
were found and fines in the amount of $220,497 were proposed.
5.1.3 Goals for Fiscal Year 2019
• Notify OSHA quarterly of any company that has employees with elevated
blood lead levels equal to or greater than 40 µg/dL
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 24
• Notify OSHA within 24 hours of any case with an elevated blood lead level
equal to or greater than 60 µg/dL
5.2 Census of Fatal Occupational Injuries and Illnesses (CFOI)
The U.S. Bureau of Labor Statistics (BLS) developed CFOI as a cooperative venture
between the states and the federal government to gather data about these events.
IDPH has participated in CFOI since 1993. The data compiled by CFOI are published each
year and contain information on the workers involved and the events surrounding each
fatality.
In 2016, Illinois CFOI recorded 171 work related deaths. From January - June 2008, fatal
occupational illnesses were collected by manually reviewing death certificates to collect
information where the decedent's occupation, known occupational exposures, and
cause of death were linked in scientific publications. In mid-2008, electronic death
certificates were implemented in the Division of VR and the manual review was no
longer possible. This operational change affected the number of fatal occupational
illnesses collected in Illinois. Beginning in 2012 and moving forward, BLS ceased
collecting work related illness fatalities. BLS has determined that because the capture of
illnesses cannot be comprehensive, they would prefer staff spend time collecting and
verifying injuries only.
5.2.1 Review and Evaluation of Fiscal Year 2018 Goals
• Completed the summary report of the 2016 fatal occupational injury data
• Provided information on fatal occupational injuries to the BLS, the funding
source, in accordance with the required schedule
5.2.2 Goals for Fiscal Year 2019
• Publish a summary report of the 2017 fatal occupational injury data by
January 2019
• Meet the deadlines for data completion required by BLS
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 25
5.3 Survey of Occupational Injuries and Illnesses (SOII) (formerly
Occupational Safety and Health Survey)
SOII focuses on surveillance of non-fatal workplace injuries and illnesses. The Illinois
SOII is supported through a cooperative agreement between the states and the BLS.
The Illinois data are pooled with that from other states to provide the total injury and
illness rate for each industrial group at the national level. Because of Illinois’
participation, the data also are published annually and specifically for Illinois to give
information on incidence rates for the type of injury, body part of the injury, the source
of the injury, and the event causing the injury.
5.3.1 Review and Evaluation of Fiscal Year 2018 Goals
• Submitted data files on all reported occupational injuries and illnesses of
the surveyed companies to the BLS
• Collected, coded, and entered all 2017 data prior to BLS deadlines
5.3.2 Survey Process and Achievements for Fiscal Year 2018
In January 2018, BLS and ODR sent survey forms to 5,313 private employers and
364 public employers for 2017 data. A second request for data was sent in
February, a third request was sent in April, and a fourth request was sent in
May. Non-responding companies were then contacted by telephone to solicit
data. The final, overall survey response rate was 86 percent, which exceeded
the cooperative agreement minimum requirement for data publication.
5.3.3 Goals for Fiscal Year 2019
• Continue all data collection activities in FY19 and maintain the high
standards achieved by the program
• Complete the descriptive report of 2017 Survey of Occupational Injuries and
Illnesses (SOII)
• Meet the deadlines assigned by BLS
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 26
6. Hazardous Substances Registry
The Hazardous Substances Registry component of the IHHSR is not funded. As a result, only
geocoding activities are performed through support from funded components to create value-
added registry data. The geocodes assigned to cancer and birth defect incident reports form the
basis for development of a comprehensive geographic information system (GIS) capacity within
the IHHSR system.
6.1 Geocoding Process and Accomplishments
6.1.1 Geocoding Cancer and Birth Defects Data
Population-based data for the Illinois State Cancer Registry and the Adverse
Pregnancy Outcomes Reporting System were geocoded in-house using software
program, Map Marker USA v.30®.
The records were assigned geocodes using the North American Datum (NAD) 83
standard, which is the most recent available. NAD is the base set of coordinate
readings used to assign latitude and longitude coordinates in the United States.
The new standard reflects emerging knowledge about the shape of the earth
and corrects for large numbers of surveying errors accumulated in the old
datum (NAD27).
The process includes: address standardization; verification of ZIP code based on
city; assignment of ZIP +4 based on address and assignment of latitude and
longitude codes, including specificity level of the code or reason the record
could not be coded.
The level of completeness for each geocode element varied little by year of
diagnosis (see range in Table 6.1.1.1). A detailed quality assessment of the
geocoding results for cancer data has been completed and will serve as a
reference document for researchers using geocoded registry data.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 27
Table 6.1.1.1 Percentage of IHHSR Reports with Complete Geocoding as of
November 2017
Range of Percentage Complete by Diagnosis Year
Average all years
Lowest
Highest
Cancer Reports (n=1,801,606 cases for diagnosis years 1986-2015)
ZIP code
100.0
100.0
100.0
ZIP +4 code
96.1
92.0
98.9
Lat/Lon code
1
address specific
centroid ZIP +4
centroid ZIP +2
centroid ZIP
100.0
92.5
0.5
0.6
6.4
100.0
87.1
0.2
0.4
2.3
100.0
96.6
0.8
1.2
11.7
APORS Reports (n= 423,109) cases for birth years 1989-2017)
ZIP code
98.0
91.3
100.0
ZIP +4 code
94.1
90.5
99.0
Lat/Lon code
1
address specific
centroid ZIP +4
centroid ZIP +2
centroid ZIP
98.0
93.0
1.1
1.6
2.3
91.1
90.0
0.5
0.2
0.3
100.0
98.3
1.8
3.7
5.3
1
Latitude and longitude
6.2 Goals for Fiscal Year 2018
• Continue to geocode new records submitted to ISCR and APORS
7. Cluster Inquiries and Assessments
7.1 Review and Evaluation of Fiscal Year 2018 Goals
• Responded to all inquiries with information and educational materials regarding cancer
diseases
7.2 Fiscal Year 2018 Accomplishments
In FY18, IDPH received nine calls concerning perceived cancer excesses. The response
protocol requires staff to first discuss general epidemiologic information about cancer
with the caller, explain the cluster protocol and expected outcomes, and send
educational materials when appropriate. Staff used published cancer rates by county,
epidemiologic reports, and data from the public data files or general information about
the frequency of cancer or causes of cancer to help address the callers’ concerns. One
call received in FY17and completed in FY18 required a more expansive approach to
addressing community questions. This approach has included multiple conference calls,
analysis of observed and expected cancer cases for specific geographic areas, and
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 28
additional explanation of cancer registry collection methods and quality control
measures. The investigation revealed higher than expected cancer cases in adult men
largely driven by lung and prostate cancers in the study area. Females had higher than
expected numbers of cases of lung, uterine, and breast cancer cases. Women less than
fifty were observed to have higher than expected numbers of breast cancer
cases. Pediatric cancers were also examined; however, no significant increases in
pediatric cancers were observed in the study area. While increases in cancer cases were
observed in specific areas of the study no clear explanation exists as to why. These
results were presented and discussed directly with requestors that included community
members, medical professionals, and state legislators. This particular investigation was
published in 2018 in Epidemiologic Report Series 17:09 and is publicly available.
7.3 Fiscal Year 2019 Objectives
• Respond to all inquiries with information and educational materials regarding cancer
diseases
• Complete cluster assessments within 12 months of the written request if there is a
known carcinogenic exposure and a cancer assessment is launched
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 29
8. Research Program
The research section of the IHHSR provides a crucial link between data collection and data
dissemination and between raw data and information. Through various formats, registry data
were summarized, tabulated, analyzed, presented, and disseminated to policy makers, health
professionals, and the public.
8.1 Fiscal Year 2018 Major Accomplishments
8.1.1 Provision of Epidemiologic Support to IDPH Committees and
Workgroups
IDPH Division of Epidemiologic Studies staff continued to co-chair and
participate in IDPH's IRB, the Open Data Forum, Public Use Data Group (PUDG),
Opioids projects/databases, IDPH Academic Partnership, IVRS Steering
Committee, and Internal Data Sharing Workgroup. Six staff serve on different
committees in various capacities.
8.1.2 Provision of Peer-Review Service to Scientific Publication
Division staff provided professional reviews to the Journal; Health Security, on
articles about climate changes and data security.
8.1.3 Provision of Epidemiologic Supervision and Tutoring
Division staff provided supervisor roles and other assistance to various interns,
CDC assignees and CSTE fellows during FY17.
8.1.4 Publication of the Department-wide Illinois Morbidity and Mortality
Bulletin (IMMB)
The Division continued to publish this bulletin on behalf of IDPH. IMMB targets
statewide public health professionals, researchers, and policy makers. The
inauguration issue contained three articles. Subsequent issues contained two
reports each. A total of six issues have been published as of the end of FY18.
8.1.5 Technical Assistance
Technical assistance has been provided by staff in the areas of
statistics/epidemiology, research methods, data confidentiality review, Freedom
of Information Act (FOIA) and media requests, data linkage, SAS® programming,
data analysis and interpretation, data de-duplication, surveillance system
evaluation, quality control, and research data requests continued to be
provided by researchers to various IDPH offices and divisions. IDPH Division of
Epidemiologic Studies (Division) researchers were frequently called upon by the
IDPH Office of the Director, the Institutional Review Board (IRB), and other IDPH
programs for expertise on different technical and research issues, such as
program evaluation, de-identification of individual data records, and updating
State Health Improvement Plan (SHIP) documents and statistics. The Division
researchers also continued to provide guidance and technical assistance to
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 30
IDHFS in its effort to establish new policy and practices for public data release.
Division staff also provided interviews and responses to medical requests on
various disease issues.
8.1.6 IDPH Institutional Review Board
The Division continued to staff the IDPH IRB, with one staff serving as the IRB
manager and one as acting chair. A number of data requests from outside
researchers and organizations were processed and fulfilled. The IRB also
serves as a link between outside researchers and Department Responsible
Individuals (RIs) in various programs.
8.2 Scientific Publications in Fiscal Year 2018
The following articles have been submitted, accepted or published:
8.2.1 Delaney A, Mai C, Smoots A, Cragan J, Ellington S, Langlois P, Breidenbach R,
Fornoff J et al. Population-Based Surveillance of Birth Defects Potentially
Related to Zika Virus Infection – 15 States and U.S. Territories, 2016. Morbidity
and Mortality Weekly Report. January 26, 2018, 67(3);91-96.
8.2.2 St. Louis AM, Kim K, Browne KL, Liu G, Liberman RF, Nembhard WN, Canfield
MA, Copeland G, Fornoff J, Kirby RS for the National Birth Defects Prevention
Network. Prevalence trends of selected major birth defects: A multi-state
population-based retrospective study, United States, 1999-2007. Birth Defects
Research, Part A: Clinical and Molecular Teratology. E-print 11/20/2017.
8.2.3 Sandidge T, Fornoff J. High Level of Satisfaction among Families Receiving High
Risk Infant Follow-up (HRIF) Services. Illinois Morbidity and Mortality Bulletin,
December 2017.
8.2.4 Yanik EL, Shiels MS, Smith JM, Clarke CA, Lynch CF, Kahn AR, Koch LA, Pawlish
KS, Engels EA. Contribution of Solid Organ Transplant Recipients to the Pediatric
Non-Hodgkin Lymphoma Burden in the United States. Cancer 2017 Dec. 1;
123(23):4663-4671. Doi: 10.1002/cncr:30923
8.3 Other Recent Reports or Publications That Used Registry Data
8.3.1 March of Dimes. Peristats. Available at
http://www.marchofdimes.org/Peristats/whatsnew.aspx?id=77
8.3.2 Grosse S, Berry R, Tilford J, Kucik J, Waitzman N. Retrospective Assessment of
Cost Savings from Prevention. American Journal of Preventive Medicine 2016
May volume 50, issue 5, Supplement 1, Pages S74-S80.
8.3.3 Birth Defects Research Part A: Clinical and Molecular Teratology Volume 109,
Issue 18, November 2017, Pages: S29-S31.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 31
8.3.4 Quinn T Ostrom, Haley Gittleman, Peter Liao, Toni Vecchione-Koval, Yingli
Wolinsky, Carol Kruchko, Jill S Barnholtz-Sloan; CBTRUS Statistical Report:
Primary brain and other central nervous system tumors diagnosed in the United
States in 2010–2014, Neuro-Oncology, Volume 19, Issue suppl_5, 6 November
2017, Pages v1–v88, doi: 10.1093/neuonc/nox158.
8.3.5 U.S. Centers for Disease Control and Prevention. State Cancer Profiles.
Interactive query available at http://statecancerprofiles.cancer.gov/
; U.S.
Department of Health and Human Services, U.S. Centers for Disease Control and
Prevention.
8.3.6 U.S. Cancer Statistics Working Group. U.S. Cancer Statistics Data Visualizations
Tool, based on November 2017 submission data: U.S. Department of Health and
Human Services, Centers for Disease Control and Prevention and National
Cancer Institute;
www.cdc.gov/cancer/dataviz,(https://www.cdc.gov/cancer/dataviz) June 2018.
8.3.7 2001–2015 Database: National Program of Cancer Registries and Surveillance,
Epidemiology, and End Results SEER*Stat Database: NPCR and SEER Incidence –
USCS 2001–2015 Public Use Research Database, United States Department of
Health and Human Services, Centers for Disease Control and Prevention and
National Cancer Institute. Released June 2018, based on the November 2017
submission. Available at www.cdc.gov/cancer/npcr/public-
use.(https://www.cdc.gov/cancer/npcr/public-use)
8.3.8 2005–2015 Database: National Program of Cancer Registries and Surveillance,
Epidemiology, and End Results SEER*Stat Database: NPCR and SEER Incidence –
USCS 2005–2015 Public Use Research Database, United States Department of
Health and Human Services, Centers for Disease Control and Prevention and
National Cancer Institute. Released June 2018, based on the November 2017
submission. Available at www.cdc.gov/cancer/npcr/public-
use.(https://www.cdc.gov/cancer/npcr/public-use)
8.3.9 Copeland G, Green D, Firth R, Wohler B, Wu XC, Schymura M, De P, Hofferkamp
J, Sherman R, Kohler B (eds). Cancer in North America: 2011-2015. Volume
One: Combined Cancer Incidence for the United States, Canada and North
America. Springfield, Ill.: North American Association of Central Cancer
Registries, Inc. June 2018.
8.3.10 Rauscher GH, Silva A, Pauls H, Fraso J, Bonini MG, Hoskins K. Racial disparity in
survival from estrogen and progesterone receptor positive breast cancer:
implications for reducing breast cancer mortality implications. Breast Cancer Res
Treat. 2017 June: 163(2): 321-330. Doi: 10.1007/s10546-017-4166
8.3.11 Copeland G, Green D, Firth R, Wohler B, Wu XC, Schymura M, De P, Hofferkamp
J, Sherman R, Kohler B (eds). Cancer in North America: 2011-2015. Volume
Two: Registry-specific Cancer Incidence in the United States and Canada.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 32
Springfield, Ill.: North American Association of Central Cancer Registries, Inc.
June 2018.
8.3.12 Copeland G, Green D, Firth R, Wohler B, Wu XC, Schymura M, De P, Hofferkamp
J, Sherman R, Kohler B (eds). Cancer in North America, 2011-2015. Volume
Three: Registry-specific Cancer Mortality in the United States and Canada.
Springfield, Ill.: North American Association of Central Cancer Registries, Inc.
June 2018.
8.3.13 Cronin KA, Lake AJ, Scott S, et al. Annual Report to the Nation on the Status of
Cancer, Part I: National Cancer Statistics. Cancer. Online May 22, 2018. DOI:
10.1002/cncr.31551.
8.3.14 American Cancer Society. Cancer Facts & Figures 2017. Atlanta, GA.: American
Cancer Society; 2017.
8.3.15 Negoita S, Feuer EJ, Mariotto A, et al. Annual Report to the Nation on the Status
of Cancer, Part II: Recent Changes in Prostate Cancer Trends and Disease
Characteristics. Cancer. Online May 22, 2018. DOI: 10.1002/cncr.31549
8.3.16 Tota JE, Engels EA, Madeleine MM, Clarke CA, Lynch CF, Ortiz AP, Hernandez BY,
Chaturvedi AK. Risk of oral tongue cancer among immunocompromised
transplant recipients and human immunodeficiency virus-infected individuals in
the United States. Cancer 2018 Jun 15; 124(12):2515-2522. doi:
10.1002/cncer.31359.
8.3.17 Gilsenan A, Harding A, Kellier-Steele N, Harris D, Midkiff K, Andrews E. The
Forteo Patient Registry linkage to multiple state cancer registries: study design
and results from the first 8 years. Osteoporosis International. 2018 Jul 5. doi:
10.1007/s00198-018-4604-8.
8.3.18 Johnson C, Wilson R, Nishri, D, Copeland G, Green D, Firth R, Wohler B, Wu XC,
Schymura M, De P, Hofferkamp J, Sherman R, Kohler B (eds). Cancer in North
America, 2011-2015. Volume Four: Cancer Survival in the United States and
Canada 2008-2014. Springfield, Ill.: North American Association of Central
Cancer Registries, Inc. June 2018.
8.3.19 Weiss D, Tomasallo CD, Meiman JG, Alarcon W, Graber NM, Bisgard KM,
Anderson HA. Elevated Blood Lead Levels Associated with Retained Bullets –
United States, 2003-2012.
MMWR Morb Mortal Wkly Rep 2017;66:130–133. DOI:
http://dx.doi.org/10.15585/mmwr.mm6605a2
.
8.4 Epidemiologic Report Series
The following reports were released in IDPH's Epidemiologic Report Series; all reports
are available to the public upon request.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 33
8.4.1 Garner K, Shen T. Incidence of Cancer in ZIP Codes 60655, 60645, 60805 and
60453 (Cook County), Illinois, 2005-2014. Epidemiologic Report Series 17:09.
Springfield, Ill.: Illinois Department of Public Health, September 2017.
8.4.2 Sandidge T, Fornoff JE, Shen T. Trends in the Prevalence of Birth Defects in
Illinois 2002-2014. Epidemiologic Report Series 18:01. Springfield, Ill.: Illinois
Department of Public Health, March 2018.
8.4.3 Sweeny M, Wamack J. Survey of Occupational Injuries and Illnesses in Illinois,
2016. Epidemiologic Report Series 18:01. Springfield, Ill.: Illinois Department of
Public Health, April 2018.
8.4.4 Swenny M, Wamack J. Census of Fatal Occupational Injuries, Illinois, 2016.
Epidemiologic Report Series 18:02. Springfield, Ill.: Illinois Department of Public
Health, April 2018.
8.4.5 Garner K, Shen T. Illinois State Cancer Incidence Review and Update 1986-
2015. Epidemiologic Report Series 18:03. Springfield, Ill.: Illinois Department of
Public Health, May 2018.
8.4.6 Garner K, Shen T. Illinois County Cancer Statistics Review Incidence, 2011-
2015. Epidemiologic Report Series 18:04. Springfield, Ill.: Illinois Department of
Public Health, May 2018.
8.4.7 Garner K, Shen T. Illinois State Cancer Mortality Review and Update 1986-
2015. Epidemiologic Report Series 18:05. Springfield, Ill.: Illinois Department of
Public Health, April 2018.
8.4.8 Smith G, Hebert L, Koch L, Shen T. Validation of Areal Interpolation
Methodology for Estimating Cancer Incidence in Chicago Wards, 2005-2014.
Epidemiologic Report Series 18:06. Springfield, Ill.: Illinois Department of Public
Health, June 2018.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 34
8.5 Fiscal Year 2018 Presentations by IDPH Division of Epidemiologic
Studies Staff
Title Event Date
APORS-Case Identification and
Completion of Form (in-service
training)
Vista Medical Center East
(Waukegan) by phone
August 2017
APORS-Overview, Database, Case
Identification and Completion of
Form
Elmhurst Memorial Hospital
(Elmhurst) by phone
August 2017
APORS-Data System Training
St. Mary’s Hospital (Decatur) by
phone
August 2017
APORS-Data System Training
Gateway Regional Medical Center
September 2017
APORS-Case Identification and
Reporting Webinar
Presence Resurrection Medical
Center (Chicago)
September 2017
APORS-Moving (Rapidly) to Active
Case Finding
National Birth Defect Prevention
Network Virtual Annual Meeting
September 2017
APORS-Perinatal Hepatitis B
Various hospitals and local health
departments via webinar
September 2017
ISCR-Cancer Case Reporting to the
Illinois State Cancer Registry
Illinois Medical Oncology Society
Annual Meeting (Chicago)
September 2017
APORS-Data System Training webinar
Advocate Condell Medical Center
(Libertyville)
October 2017
Student Lecture on Cancer
Surveillance to Graduate Students
UIC School of Public Health (Chicago)
September 2017
APORS-The High Risk Infant Follow-
up Program
Various hospitals and local health
departments via webinar
November 2017
APORS-Reporting Database Training
(in-service training)
Swedish American Hospital
(Rockford) by phone
December 2017
APORS-NAS Surveillance Webinar
Council of State and Territorial
Epidemiologists NAS Workgroup
December 2017
APORS-What do I do all day (and
why)?
Illinois Mathematics and Science
Academy Students
January 2018
APORS-What is an APORS birth
defect?
Various hospitals and local health
departments and DHS via webinar
January 2018
ISCR-Basic Training Workshop
Michael Bilandic Building
January 2018
ISCR-Basic Training Workshop
Decatur Memorial Hospital
January 2018
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 35
Title Event Date
ISCR-Basic Training Workshop
SSM Health Illinois, Good Samaritan
Hospital
February 2018
APORS-Service Referrals
NBDPN National Conference
March 2018
APORS-NAS Surveillance
NBDPN National Conference
March 2018
ISCR-Solid Tumor Workshop
Elmhurst Memorial Hospital
March 2018
ISCR-TNM Staging Workshop
Advocate Good Samaritan Hospital
March 2018
Student lecture on cancer cluster
investigations to graduate students
UIC School of Public Health (Chicago)
April 2018
APORS-Using the IVRS database for
local health departments
Various local health departments via
webinar
April 2018
Epi Studies
IDPH Bring Your Child to Work Day
April 2018
ISCR-Solid Tumor Workshop
St. Joseph Medical Center
April 2018
ISCR-Solid Tumor Workshop
Illinois Dept. of Natural Resources
(Springfield)
April 2018
ISCR-Solid Tumor Workshop
SIH Cancer Institute
April 2018
ISCR-TNM Staging Workshop
Illinois Dept. of Natural Resources
(Springfield)
April 2018
ISCR-TNM Staging Workshop
SSM Health Illinois, Good Samaritan
Hospital
April 2018
APORS-Case Identification and
Completion of Form (In-service
training)
Vista Medical Center East
(Waukegan) by phone
May 2018
ISCR-Solid Tumor Workshop
Northwest Community Hospital
May 2018
ISCR-TNM Staging Workshop
Methodist North at Allen Road
May 2018
ISCR-TNM Staging Workshop
Swedish American Health System
May 2018
ISCR-The Illinois State Cancer
Registry
IDPH Cancer Coalition
May 2018
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 36
Title Event Date
APORS-Data System Training (in-
service training)
Clark County Health Department by
phone
June 2018
ISCR-Cancer Burden in Illinois
Illinois Cancer Partnership
(Springfield)
June 2018
ISCR-The Illinois State Cancer
Registry
Illinois Women’s and Families Health
Conference (Bloomington)
June 2018
ISCR-The Illinois State Cancer
Registry
IDPH Career Day
June 2018
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 37
8.6 Research Data Release and Collaborations
Principal Investigator
(Affiliation)
Title Date
Funding
Source
Mark Canfield
Texas Department of State
Health Services
Study of Selected Birth
Defects Among Minorities
1999-2007
July 2012, ongoing*
Ying Wang
New York State Department of
Health
Survival of Infants and
Children With Selected Major
Birth Defects
January 2012,
ongoing*
Marilyn Browne
New York State Department of
Health
Prevalence Trends Of Selected
Major Birth Defects: A Multi-
State Population-based
Retrospective Study, United
States, 1999-2007
February 2012
(Closed 12/2017)
U.S. Centers for Disease
Control and Prevention
Prevalence Data by Race for
Selected Birth Defects for
Publication in Birth Defects
Research
May 2018
CDC
Lynn Rosenberg, Sc.D., M.S.
Sloan Epidemiology Center
Boston University
Black Women’s Health Study
February 2007,
ongoing
NIH/NCI
Rosalind Ramsey-Goldman,
M.D., Dr.PH.
Northwestern University
Exposure to
Immunosuppressive Drugs
and Cancer Risk in Systemic
Lupus Erythematosus
August 2004,
ongoing
NIH/NCI
Meir Stampfer, M.D.
Channing Laboratory Brigham
and Women’s Hospital
Health Professionals Follow-
up Study/Nurses’ Health Study
I and II
January 2004,
ongoing
NIH
Eugenia Calle, Ph.D.
American Cancer Society
Cancer Prevention Study II
1995, ongoing
ACS
Brinton, Trabert, Ph.D.
National Cancer Institute
Infertility Follow-up Study
2012, ongoing
NCI
Alicia Gilsenan, Ph.D.
RTI International
Forteo Patient Registry
February 2010,
ongoing
Eli Lilly and
Company
Mardge Cohen, M.D.
Women’s Interagency HIV
Study (WIHS)
Women’s Interagency HIV
Study (WIHS)
2000, ongoing
NIH
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 38
Principal Investigator
(Affiliation)
Title Date
Funding
Source
Garth Rauscher, Ph.D.
University of Illinois at Chicago
Comparative Effectiveness of
Breast Imaging Modalities: A
Natural Experiment
April 2013, ongoing
Agency for
Health
Research
and Quality
Barbara Luke, Ph.D.
Michigan State University
Logan Spector, Ph.D.
University of Minnesota
Assisted Reproductive
Technology and Risk of Cancer
in Women
January 2014*
NCI
Barbara Luke, Ph.D.
Michigan State University
Logan Spector, Ph.D.
University of Minnesota
Assisted Reproductive
Technology and Risk of
Childhood Cancer
July 2016
NCI
Diana Miglioretti, Ph.D.
Risk-Based Cancer Screening
in Community Settings
July 2014*
NCI
Gary Fraser, M.D., Ph.D.
Adventist Health Study II
March 2015,
ongoing
NCI
Herbert Chen, M.D.
Medullary Thyroid Carcinoma
Surveillance Study – A Case-
Series Registry
September 2014,
ongoing
The MTC
Registry
Consortium
Alicia Gilsenan, Ph.D.
RTI International
Osteosarcoma Surveillance
Study
September 2014,
ongoing
Eli Lilly &
Company
Alpa V. Patel, Ph.D.
Cancer Prevention Study III
September 2015,
ongoing
ACS
NOTE: Following are definitions of acronyms used in the above table: American Cancer Society (ACS),
U.S. Centers for Disease Control and Prevention (CDC), Cancer in North America (CINA), Illinois
Department of Children and Family Services (DCFS), Illinois Department of Human Services (DHS),
Geographic Information System (GIS), International Agency for Research on Cancer (IARC), National
Cancer Institute (NCI), National Institutes of Health (NIH), Women’s Interagency HIV Study (WIHS)
*Data set released; study remains open
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 39
9. Grants
The table below summarizes the IDPH Division of Epidemiologic Studies grant awards for FY2018.
Grant Agency Status Amount Grant Period
Occupational and Health Survey in
Illinois (continuation)
BLS Funded
September 2017
$119,838 10/1/17 – 9/30/18
Census of Fatal Occupational
Injuries in Illinois (continuation)
BLS Funded
September 2017
$101,209 10/1/17 – 9/30/18
Improvement of Birth Defects
Surveillance Program
(continuation)
CDC January 2018 $210,000 2/1/18 – 1/31/19
National Cancer Prevention and
Control Program-National
Program of Cancer Care
(continuation)
CDC Funded June
2017
$1,100,000 7/1/17 – 6/30/18
Surveillance of Illinois Neonatal
Abstinence Syndrome (new)
March of
Dimes
Funded
December 2017
$5,600 6/1/17 – 6/30/18
NOTE: Full titles of acronyms used in the above table are U.S. Centers for Disease Control and
Prevention (CDC), Bureau of Labor Statistics (BLS), and Illinois Department of Public Health (IDPH).
9.1 Funded Grants
The Division of Epidemiologic Studies received $1.53 million in grant awards in fiscal
year 2018.
9.1.1 Survey of Occupational Injuries and Illnesses in Illinois (formerly
Occupational Safety and Health Survey)
IDPH received $119,838 in September 2017 from BLS to support the 20
th
year of
the Survey of Occupational Injuries and Illnesses (SOII) in Illinois. This project is
described in Section 5.
9.1.2 Census of Fatal Occupational Injuries in Illinois
IDPH received $101,209 in September 2017 from BLS to support the 26
th
year of
the Census of Fatal Occupational Injuries (CFOI) in Illinois. This project is
described in Section 5.
9.1.3 Improvement of Birth Defects Surveillance Program
In January 2018, IDPH received $210,000 for year three of the fourth round of
surveillance grants. The progress for this project is described in Section 4.
9.1.4 National Cancer Prevention and Control Program
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 40
In June 2017, CDC awarded IDPH $8.4 million in funding for the first year of a
fourth five-year project period year of the National Cancer Prevention and
Control Program. This grant combines two previous separate grants: the
National Comprehensive Cancer Control Program and the National Program of
Cancer Registries (NPCR). The IDPH Division of Epidemiologic Studies received
$1.1 million for the NPCR component, which is in its 23
rd
year. The progress for
this project is described in Section 3.
9.1.5 Neonatal Abstinence Syndrome Surveillance
In May 2017, the March of Dimes awarded IDPH $66,166 for a one-year period
from June 1, 2017 through June 30, 2018 to carry out surveillance of Illinois
neonatal abstinence syndrome under the March of Dimes funding opportunity
“Building On Existing Infrastructure of Population-Based Birth Defects
Surveillance System to Estimate the Incidence of Neonatal Abstinence
Syndrome (NAS).” In December 2017, an additional $5,600 was awarded.
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 41
10. Cancer Reporting Facilities That Have Not Completed Reporting for the 2016
Diagnosis Year by July 1, 2017
Name
City
900 North Michigan Surgical Center
Chicago
Advanced Dermatology - Moline
Moline
Advanced Dermatology and Mohs Surgery
Batavia
Advanced Radiation Oncology Center
Gurnee
Advocate BroMenn Medical Center
Normal
Aiden Center For Day Surgery
Addison
Alpha Med Physician Group, LLC
Tinley Park
Alton Memorial Hospital
Alton
American Cancer Center
Elgin
Anderson Hospital - Cancer Center
Maryville
Arlington Dermatology
Arlington Heights
Ashton Center for Day Surgery
Hoffman Estates
Babich Skin Care
Decatur
Belleville Oncology Institute
Belleville
Breese Oncology
Breese
Cancer Treatment Center
Swansea
Carle Foundation Hospital
Urbana
Central Illinois Dermatology
Peoria
Chicago Prostate Cancer Center
Westmont
Community First Medical Center
Chicago
Crossroads Cancer Center
Effingham
Crossroads Community Hospital
Mt. Vernon
Crystal Lake Dermatology
Crystal Lake
Danville Polyclinic, LTD
Danville
Deerfield Dermatology Assoc. Ltd.
Deerfield
Dermatology and Skin Surgery Associates
Mokena
Dermatology and Mohs Surgery Institute
Bloomington
Dermatology Associates Of LaGrange
LaGrange
Dermuss Dermatology Ltd.
Barrington
Dr. John Warner Hospital
Clinton
Dundee Dermatology
West Dundee
Edgebrook Dermatology
Rockford
Edward Hospital
Naperville
Elmhurst Outpatient Surgery Center
Elmhurst
Fayette County Hospital
Vandalia
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 42
Name
City
Forefront Dermatology - Bolingbrook
Bolingbrook
Franciscan St. James Health
Olympia Fields
Franklin Hospital
Benton
Fullerton Surgery Center
Chicago
Gateway Regional Medical Center
Granite City
Golf Surgical Center
Des Plaines
Graham Hospital
Canton
Hammond-Henry Hospital
Geneseo
Harrisburg Medical Center
Harrisburg
Hartsough Dermatology
Loves Park
Illini Community Hospital
Quincy
Illinois Cancer Specialists - Radiation
Niles
Illinois Dermatology Institute - Hinsdale
Hinsdale
Illinois Dermatology Institute - Oakbrook
Westchester
Illinois Dermatology Institute - Park Ridge
Park Ridge
Illinois Dermatology Institute - Skokie
Skokie
Illinois Regional Cancer Center LLP
DeKalb
Iroquois Memorial Hospital
Watseka
John H. Stroger, Jr., Hospital of Cook County
Chicago
Karen Lynn Maloney, MD, LTD.
St. Charles
Kendall Pointe Surgery Center
Oswego
Kishwaukee Hospital
DeKalb
Lakeshore Cancer Care
Chicago
Lakeshore Surgery Center
Chicago
Johnson Dermatology
St. Charles
Little Company of Mary Hospital
Evergreen Park
MacNeal Hospital
Berwyn
Marshall Browning Hospital
DuQuoin
Maryville Oncology
Maryville
Medical Arts Associates, Ltd
Moline
Mercy Hospital and Medical Center
Chicago
MetroSouth Medical Center
Blue Island
Midwest Medical Center
Galena
Midwest Urological Group/Central Illinois Radiation Oncology
Peoria
Midwestern Regional Medical Center
Zion
Mt. Vernon Radiation Therapy Center
Mt. Vernon
Musick Dermatology
Swansea
North Branch Dermatology, LLC
Chicago
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 43
Name
City
North Shore Endoscopy Center
Lake Bluff
North Shore Surgical Center
Lincolnwood
NorthPointe Health and Wellness Center
Beloit
Northwestern Lake Forest Hospital
Lake Forest
Northwestern Medical Group Dermatopathology Lab
Chicago
Northwestern Medical Group - Grayslake
Grayslake
Northwestern Medicine Proton Center
Warrenville
OSF Saint Anthony's Health Center
Alton
OSF Saint Paul Medical Center
Mendota
OSF St. Luke Medical Center
Kewanee
OSF St. Mary Medical Center
Galesburg
Palos SurgiCenter
Palos Heights
Paris Community Hospital
Paris
Pekin Memorial Hospital
Pekin
Peoria Day Surgery Center
Peoria
Pinckneyville Community Hospital
Pinckneyville
Pinski Dermatology and Cosmetic Surgery
Bourbonnais
Plainfield Surgery Center, LLC
Plainfield
Premier Dermatology/Forefront Dermatology - Crest Hill
Crest Hill
Premier Dermatology/Forefront Dermatology - Morris
Morris
Premier Dermatology/Forefront Dermatology - Naperville
Naperville
Presence Saint Joseph Hospital - Elgin
Elgin
Presence St. Mary Hospital - Cancer Registry
Bourbonnais
Presence Holy Family Medical Center
Des Plaines
Presence Mercy Medical Center
Aurora
Presence Saint Elizabeth Hospital
Chicago
Presence Saint Francis Hospital of Evanston
Evanston
Presence St. Mary of Nazareth Hospital Center
Chicago
Presence United Samaritans Medical Center
Danville
Quad City Endoscopy, LLC
Moline
Red Bud Regional Hospital
Red Bud
Regional Surgical Center
Moline
Richland Memorial Hospital
Olney
Rochelle Community Hospital
Rochelle
Rogers Park One Day Surgery Center
Chicago
Roseland Community Hospital
Chicago
Rush Copley Medical Center
Aurora
Rush Oak Park Hospital
Oak Park
Annual Report July 2017 - June 2018
Illinois Health and Hazardous Substances Registry 44
Name
City
Sarah Bush Lincoln Regional Cancer Center
Mattoon
Sarah Culbertson Memorial Hospital
Rushville
Schaumburg Dermatology
Schaumburg
Simmons Cancer Institute, SIU School of Med
Springfield
SIU School of Med Dermatology
Springfield
Skin Care Center of Southern Illinois
Mt. Vernon
South Shore Hospital
Chicago
Southern Cook Radiation Treatment Center
Blue Island
Southwest Gastroenterology - Oak Lawn Endoscopy Center
Oak Lawn
Springfield Clinic Ambulatory Surgical Treatment Center
Springfield
SSM Health Good Samaritan
Mt Vernon
SSM Health St. Mary's
Centralia
St. Anthony's Memorial Hospital
Effingham
St. Elizabeth's Hospital
Belleville
St. Johns Hospital
Springfield
Surgical Center of the DuPage Medical Group
Lombard
Swaminathan Dermatology
Peoria
Swedish Covenant Hospital
Chicago
The Center For Outpatient Medicine
Bloomington
Thorek Memorial Hospital
Chicago
Touchette Regional Hospital
Centreville
UnityPoint Health - Methodist
Peoria
UnityPoint Health - Trinity
Moline
University Dermatology and Vein Clinic
Skokie
Valley Ambulatory Surgery Center
St. Charles
Valley West Hospital
Sandwich
Vista Health Medical Center - EAST
Waukegan
Weiss Memorial Hospital
Chicago
West Suburban Medical Center
Oak Park
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