New York State Cancer Registry

New York State Cancer Registry
Name	New York State Cancer Registry
Formation	1976
Type	State cancer registry
Headquarters	Albany, New York
Region served	New York
Parent organization	New York State Department of Health

Contents

New York State Cancer Registry is a population-based cancer surveillance system established to collect, analyze, and report information on cancer incidence across New York, supporting clinical, epidemiologic, and public health decision-making for entities such as Centers for Disease Control and Prevention, National Cancer Institute, American Cancer Society, World Health Organization, and New York State Department of Health. The registry links to hospital networks like Mount Sinai Health System, NYU Langone Health, Montefiore Medical Center, Northwell Health, and Roswell Park Comprehensive Cancer Center while interfacing with databases maintained by Social Security Administration, Medicare, Centers for Medicare and Medicaid Services, Statewide Planning and Research Cooperative System, and federal programs including the National Program of Cancer Registries.

History

The registry was legislated and expanded during an era shaped by initiatives led by figures and institutions such as Richard Nixon, the National Cancer Institute, Elaine S. Jaffe-era hematopathology advances, and the passage of public health statutes similar to those underpinning the Cancer Registries Act used in other states, contemporaneous with programs at Memorial Sloan Kettering Cancer Center, Roswell Park Comprehensive Cancer Center, Columbia University Irving Medical Center, Cornell University, and State University of New York. Early operations coordinated with surveillance frameworks from the Surveillance, Epidemiology, and End Results Program and drew on classification systems developed by World Health Organization committees and the International Agency for Research on Cancer. Over ensuing decades, collaborations broadened to include academic partners such as SUNY Downstate Medical Center, University at Buffalo, Stony Brook University, University of Rochester Medical Center, and federal reviews by Department of Health and Human Services.

Administrative oversight resides within the New York State Department of Health and interfaces with advisory bodies and stakeholders like the Advisory Committee on Cancer Registration, the New York State Public Health and Health Planning Council, and academic steering committees from Columbia University, New York University School of Medicine, Weill Cornell Medicine, Icahn School of Medicine at Mount Sinai, and Roswell Park Comprehensive Cancer Center. Funding and governance incorporate grant mechanisms from the Centers for Disease Control and Prevention, cooperative agreements with the National Cancer Institute, and reporting mandates tied to statutes and regulations modeled on standards used by Council of State and Territorial Epidemiologists and managed-care contracts with entities such as Aetna, Blue Cross Blue Shield Association, and UnitedHealthcare. Technical governance uses classification standards from the International Classification of Diseases for Oncology, registry software practices consistent with North American Association of Central Cancer Registries, and privacy frameworks aligned with Health Insurance Portability and Accountability Act of 1996.

Case ascertainment is achieved via mandated reporting from hospitals, pathology laboratories, outpatient clinics, and cancer centers including NewYork-Presbyterian Hospital, Beth Israel Medical Center, Queens Hospital Center, Kings County Hospital Center, and specialized institutions such as Memorial Sloan Kettering Cancer Center and Roswell Park Comprehensive Cancer Center. Data elements conform to coding rules from the International Classification of Diseases, staging schemas from the American Joint Committee on Cancer, and treatment coding consistent with Current Procedural Terminology and billing datasets from Centers for Medicare and Medicaid Services. Coverage encompasses residents of New York City, Albany, Buffalo, Rochester, Syracuse, and rural counties including Sullivan County and Monroe County, integrating records linked to death certificates from state vital records offices and federal mortality files from the National Center for Health Statistics.

Published outputs include incidence reports, trend analyses, and interactive dashboards frequently cited by research groups at Columbia University Mailman School of Public Health, Icahn School of Medicine at Mount Sinai, University at Buffalo School of Medicine and Biomedical Sciences, Roswell Park Comprehensive Cancer Center, and policymakers in the New York State Legislature. Data support peer-reviewed studies appearing in journals like Journal of Clinical Oncology, Cancer Epidemiology, Biomarkers & Prevention, The Lancet Oncology, American Journal of Public Health, and Annals of Internal Medicine, and inform programs run by American Cancer Society, Susan G. Komen for the Cure, The Leukemia & Lymphoma Society, and local health departments in New York City Department of Health and Mental Hygiene, Nassau County Department of Health, and Suffolk County Health Department. Routine publications align with national reporting systems including submissions to the Surveillance, Epidemiology, and End Results Program and the United States Cancer Statistics dataset.

Quality assurance protocols adopt standards from the North American Association of Central Cancer Registries, auditing methodologies used by National Program of Cancer Registries, and case validation techniques practiced at academic centers such as Memorial Sloan Kettering Cancer Center and Roswell Park Comprehensive Cancer Center. De-duplication, reabstracting, and timeliness metrics are benchmarked against guidelines from the Centers for Disease Control and Prevention, while data security adheres to safeguards established by the Health Insurance Portability and Accountability Act of 1996 and state confidentiality statutes enforced by the New York State Attorney General. Linkages to administrative files respect protections invoked in litigation and policy debates involving entities such as Aetna and Centers for Medicare and Medicaid Services.

The registry underpins epidemiologic studies on cancer disparities conducted with partners at Columbia University, City University of New York, SUNY Downstate Health Sciences University, Mount Sinai Health System, and New York University, informing interventions like screening campaigns coordinated with American Cancer Society and vaccination efforts such as those advocated by Advisory Committee on Immunization Practices and implemented through local health departments. Findings have guided regional cancer control plans, workforce training at institutions like Roswell Park Comprehensive Cancer Center and Memorial Sloan Kettering Cancer Center, and grant-funded research by the National Cancer Institute and the Centers for Disease Control and Prevention. The registry's data facilitate clinical trials enrollment at centers such as Memorial Sloan Kettering Cancer Center, Roswell Park Comprehensive Cancer Center, Mount Sinai Hospital, and NYU Langone Medical Center, and support policy analyses by legislators in the New York State Legislature and federal agencies including the Department of Health and Human Services.

Category:Cancer registries