NAACCR Online Education
Secondary Data Sharing
Recorded On: 04/26/2023
This webinar will provide information on secondary data sharing initiatives, resources, and benefits from the research, registry, and patient perspective. Inspire registries to eliminate barriers to secondary data sharing and adopt resources to facilitate such sharing while protecting registry data.
Secondary Data Sharing Fact Sheet
Presentations:
Maximizing Research Discovery Through Secondary Data Sharing
Dennis Deapen, DrPH, MPH
University of Southern California
VPR Templated DUA: A Vehicle for Secondary Data Sharing
Castine Clerkin, MS, CTR
NAACCR
Unique Results Obtained Through Secondary Data Sharing of the Multiethnic Cohort
Lynne Wilkens, DrPH, MS
University of Hawaii Cancer Center
A Registry Perspective on Secondary Data Sharing
Marjorie Carter, MS
Utah Cancer Registry
Patient Perspective on Secondary Data Sharing
Hanna Jorgenson
Cancer Survivor
Dennis Deapen, DrPH, MPH
Professor Emeritus
University of Southern California
Dennis Deapen is a public health policy wonk who seeks to extend his cancer registry and research experience to reduce barriers and increase efficiency in cancer research and prevention. He is Professor Emeritus at the University of Southern California.
Castine Clerkin, MS, CTR
VPR Program Manager, NAACCR
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, including system development and testing, coordination with researchers and registries, and identification of efficiencies to streamline the cancer registry linkage, approval and data release process. She serves as chair to both the VPR DUA Task Force and the Secondary Data Sharing Task Force.
Lynne Wilkens, DrPH
Director, Biostatistics Shared Resource
University of Hawai'i Cancer Center
Dr. Wilkens has a DrPH from the University of North Carolina in Biostatistics and has worked in health research for over 30 years including over 25 years in cancer research. Much of this effort has focused on prevention in the domains of epidemiology and intervention research. A primary focus for Dr. Wilkens at UHCC has been in the quantification of cancer incidence and mortality rates for the multiethnic populations of Hawaiʻi and the US affiliated Pacific, and studying the underlying causes of differences in cancer risks between ethnic groups. Genetic as well as lifestyle factors, including diet, physical activity, smoking and neighborhood environment, have been considered. Dr. Wilkens has published over 300 publications from these efforts.
Hanna Jorgenson
Cancer Survivor
Hanna Jorgenson is a cancer survivor and lives with Li-Fraumeni syndrome, a cancer predisposition syndrome. She is passionate about sharing her story and advocates for data sharing to help improve outcomes for cancer patients and their families.
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