Secondary Release of Cancer Registry Data

Recorded On: 05/26/2021

Setting the Stage: Conflicts between NIH data sharing requirements for researchers and registry secondary data release policies--how to improve
Dennis Deapen, DrPH, MPH
Past Director, Los Angeles Cancer Surveillance Program
NIH Policies on Data and Resource Sharing
Nonye Harvey, DrPH
Health Science Policy Analyst, National Institute of Health
Julia Slutsman, PhD
Director Genomic Data Sharing Implementation, National Institute of Health
Strength in Numbers: Cancer Research in the NCI Cohort Consortium
A. Heather Eliassen, Sc.D.
Associate Professor, Harvard and Brigham & Women's Hospital
The PLCO Cancer Screening Trial: Navigating restrictions to share registry-linked data with the cancer research community
Eric Miller, PhD
Epidemiologist, National Cancer Institute
Envisioning the Way Forward...Together
Castine Clerkin, MPH
Program Manager Virtual Pooled Registry, NAACCR

Dennis Deapen, DrPH, MPH


Los Angeles Cancer Surveillance Program - USC

Dennis Deapen is Professor of Preventive Medicine at the USC School of Medicine. He has been Director of the Los Angeles Cancer Surveillance Program since 1988. He received a MPH from Loma Linda University and Doctor of Public Health from UCLA. He has been an epidemiologist since 1977 conducting research in etiology, prevention and survivorship of cancer. His primary interests include cancer among immigrants and pediatric and young adult cancer as well as developing new methodologies for cancer surveillance and research. He has been author or co-author of over 180 peer-reviewed publications. He served as President of the North American Association of Central Cancer Registries and a member of the Executive Committee of the International Association of Cancer Registries.

Nonye Harvey, DrPH, MPh

Health Science Policy Analyst

National Institutes of Health

Dr. Nonye Harvey is a Health Science Policy Analyst in the Genomic Data Sharing Implementation Office housed within the Immediate Office of the Director at the Office of Extramural Research (OER), NIH Office of the Director.  She works across NIH, on trans-NIH groups and committees, to support central coordination and standardizing of systems and processes for optimal implementation of NIH data sharing policies across NIH and the broader scientific community.  She earned her M.P.H. in maternal and child health and international health from the GWU Milken Institute School of Public Health and her Dr.P.H. in leadership in public health from the University of Illinois at Chicago School of Public Health.

Julia Slutskman, PhD

Director, Genomic Data Sharing Policy Implementation

National Institutes of Health

Dr. Julia Slutsman is a bioethicist and Director of the Genomic Data Sharing Policy Implementation Office in the Office of Extramural Research, NIH.   Her work focusses on supporting coordination of activities necessary for effective implementation of NIH data sharing policies while maintaining research participant confidentiality and data privacy. Dr. Slutsman earned her Ph.D. from the Program in Law, Ethics and Health at the Johns Hopkins University Bloomberg School of Public Health.  She completed a post-doctoral fellowship in the ethics of public health and cancer prevention at the National Cancer Institute.

Heahter Eliassian, Sc.D.

Associate Professor

Harvard and Brigham & Women's Hospital

Dr. Heather Eliassen is an Associate Professor of Medicine and Epidemiology at Harvard Medical School and the Harvard T.H. Chan School of Public Health. She is Associate Director of the Channing Division of Network Medicine and Director of the Chronic Disease Epidemiology Unit. Dr. Eliassen is co-PI of two ongoing prospective cohort studies, the Nurses’ Health Study (NHS), founded in 1976 with 121,700 women, and the Nurses’ Health Study II (NHSII), founded in 1989 with 116,400 women. She also is Director of the BWH/Harvard Cohort Biorepository, which houses more than three million biospecimens from 200,000 cohort participants, and co-lead of the Cancer Epidemiology Program at the Dana Farber/Harvard Cancer Center. Her research focuses on the etiology of breast cancer, examining associations between lifestyle factors, biomarkers of lifestyle and hormones, and breast cancer risk and progression. She investigates ways in which women may alter their lifestyle to reduce breast cancer risk and improve survival after diagnosis.

Eric Miller, MS, PhD


National Cancer Institute

Eric Miller is an Epidemiologist at the National Cancer Institute. He received his Masters and Doctorate in epidemiology from the University of North Carolina at Chapel Hill. Previously, he worked at the Centers for Disease Control and Prevention as a Senior Research Fellow in the National Center for Health Statistics, as an Epidemic Intelligence Service Officer, and as an Epidemiologist in the National Center on Birth Defects and Developmental Disabilities. Eric was also the Epidemiology Manager for the Texas Cancer Registry in the Texas Department of State Health Services.

Castine Clerkin, MS, CTR

VPR Program Manager, NAACCR

Castine Clerkin is the Program Manager for NAACCR’s Virtual Pooled Registry Cancer Linkage System. In this role she oversees all aspects of the project, from pilot linkages to workgroup calls to system development and testing.  Prior to joining NAACCR, Castine was a Program Consultant with CDC’s National Program of Cancer Registries for over 7 years and led various special projects, including early case capture of childhood cancer cases.  Castine began her career in cancer surveillance in 2001, working as the epidemiologist and data manager for the Maine Cancer Registry.