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2021 Illinois Health and Hazardous Substances Registry Annual Report

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 35th annual report and it describes major registry activities and accomplishments from July 2020 through June 2021 (FY21).

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.

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.

Fiscal Year 2021 Highlights

  • Received $3.9 million from federal funds and nearly $41,716 from other non-general state revenue sources, mostly through competitive processes, to support activities of the Division of Epidemiologic Studies.
  • Collected detailed case reports on Illinois residents with 69,412 newly diagnosed cancer cases (2017), 11,267 children with adverse pregnancy outcomes (2018), 2,076 adult lead poisoning cases (2020), 27,272 representative non-fatal occupational disease and injury sample records (2019), and 158 fatal occupational injuries (2019).
  • The Illinois State Cancer Registry (ISCR) became a registry supported by the National Cancer Institute’s Surveillance, Epidemiology and End Result (SEER) program.
  • Responded to 11 requests for general information about the registry, 28 requests for epidemiologic reports and registry data, and 13 special data requests or collaborations from outside researchers.
  • Responded to three inquiries about perceived cancer excesses in local communities and neighborhoods.
  • Prepared and submitted nine grant proposals to support the registry’s operations and research.
  • Released five reports in the Epidemiologic Report Series, and prepared four written reports for quality control studies of registry data.
  • Authored or co-authored eight scientific papers for peer-reviewed journals.
  • Data released by the registry were used in at least 12 published studies by outside researchers.
  • Data collected by the IHHSR registry submitted to federal and other collaborating agencies and organizations to add to various national and international health surveillance data systems.
  • Illinois Occupational Surveillance Program (IOSP) submitted 27 Council of State and Territorial Epidemiologists (CSTE) Occupational Health Indicators for Illinois to the National Institute of Occupational Safety and Health (NIOSH).
  • Facilitated data sharing agreements between Illinois Department of Labor and the Mine Safety and Health Administration;
  • IOSP obtained data sharing agreements with the Cook County Department of Public Health to get Essence data, hospital records and vital records of both civilians and law enforcement officers injured during police-civilian contact; with the Illinois Department of Transportation to obtain Police Crash Reports; with the Illinois Workers’ Compensation Commission to obtain first reports of injuries and records of “claims;” from the Illinois Poison Center to obtain pesticide poisoning data; with the national Burn Repository.
  • IOSP obtained a contract from the Consumer Products Safety Commission to provide injury data (including poisonings) from the University of Illinois Health System.
  • 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 nine employees from eight employers with elevated blood lead levels to the U.S. Occupational Safety and Health Administration (OSHA) for onsite inspection.
  • Delivered presentations at 4 professional meetings.
  • Provided leadership and management support to IDPH Institutional Review Board (IRB), with three Division of Epidemiologic Studies staff serving as members -- one as vice chair, one as the IRB's standing coordinator, and one as a regular member.

Illinois Health and Hazardous Substances Registry Coordinating Council

The IHHSR Act lists the composition of the Health and Hazardous Substances Coordinating Council as follows: 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), and 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 2021. Instead, the council reviewed and approved the annual report via written ballot.

Goals for Fiscal Year 2022

  • Continue to collect complete, timely, and high-quality data to monitor disease distributions and trends among Illinois residents.
  • Engage partners, stakeholders, and communities in data dissemination and utilization to support health research and programs.
  • Respond to public concerns about disease clusters in Illinois with registry data and information.
  • Conduct activities stipulated or required by federal cooperative or research grants and contracts.
  • Pursue grants and other funding opportunities in order to sustain and enhance the Division of Epidemiologic Studies' programs.
  • Conduct epidemiologic studies with registry data to provide information to the public health community and to policy makers.
  • Provide epidemiological data and information to federal, state, and local health education and intervention programs.
  • 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.
  • Provide health regulatory agencies with health surveillance information to enhance their intervention and regulatory programs and to improve public health and safety.
  • Participate in national registry certification and data submission activities to maintain the registry’s certification status and data utilization.