TY - JOUR
T1 - Utilizing SEER cancer registries for population-based cancer survivor epidemiologic studies
T2 - a feasibility study
AU - Gallicchio, Lisa
AU - Elena, Joanne W.
AU - Fagan, Sarah
AU - Carter, Marjorie
AU - Hamilton, Ann S.
AU - Hastert, Theresa A.
AU - Hunter, Lisa L.
AU - Li, Jie
AU - Lynch, Charles F.
AU - Milam, Joel
AU - Millar, Morgan M.
AU - Modjeski, Denise
AU - Paddock, Lisa E.
AU - Reed, Amanda R.
AU - Moses, Lisa B.
AU - Stroup, Antoinette M.
AU - Sweeney, Carol
AU - Trapido, Edward J.
AU - West, Michele M.
AU - Wu, Xiao Cheng
AU - Helzlsouer, Kathy J.
N1 - Funding Information: Research reported in this publication was supported by the NCI of the NIH under contract numbers HHSN261201300020I, HHSN261201300011I, HHSN261201300017I, HHSN261201300016I, HHSN261201300021I, and HHSN261201300004I. Publisher Copyright: © 2020 American Association for Cancer Research.
PY - 2020/9
Y1 - 2020/9
N2 - Background: While the primary role of central cancer registries in the United States is to provide vital information needed for cancer surveillance and control, these registries can also be leveraged for population-based epidemiologic studies of cancer survivors. This study was undertaken to assess the feasibility of using the NCI’s Surveillance, Epidemiology, and End Results (SEER) Program registries to rapidly identify, recruit, and enroll individuals for survivor research studies and to assess their willingness to engage in a variety of research activities. Methods: In 2016 and 2017, six SEER registries recruited both recently diagnosed and longer-term survivors with early age–onset multiple myeloma or colorectal, breast, prostate, or ovarian cancer. Potential participants were asked to complete a survey, providing data on demographics, health, and their willingness to participate in various aspects of research studies. Results: Response rates across the registries ranged from 24.9% to 46.9%, with sample sizes of 115 to 239 enrolled by each registry over a 12- to 18-month period. Among the 992 total respondents, 90% answered that they would be willing to fill out a survey for a future research study, 91% reported that they would donate a biospecimen of some type, and approximately 82% reported that they would consent to have their medical records accessed for research. Conclusions: This study demonstrated the feasibility of leveraging SEER registries to recruit a geographically and racially diverse group of cancer survivors. Impact: Central cancer registries are a source of high-quality data that can be utilized to conduct population-based cancer survivor studies.
AB - Background: While the primary role of central cancer registries in the United States is to provide vital information needed for cancer surveillance and control, these registries can also be leveraged for population-based epidemiologic studies of cancer survivors. This study was undertaken to assess the feasibility of using the NCI’s Surveillance, Epidemiology, and End Results (SEER) Program registries to rapidly identify, recruit, and enroll individuals for survivor research studies and to assess their willingness to engage in a variety of research activities. Methods: In 2016 and 2017, six SEER registries recruited both recently diagnosed and longer-term survivors with early age–onset multiple myeloma or colorectal, breast, prostate, or ovarian cancer. Potential participants were asked to complete a survey, providing data on demographics, health, and their willingness to participate in various aspects of research studies. Results: Response rates across the registries ranged from 24.9% to 46.9%, with sample sizes of 115 to 239 enrolled by each registry over a 12- to 18-month period. Among the 992 total respondents, 90% answered that they would be willing to fill out a survey for a future research study, 91% reported that they would donate a biospecimen of some type, and approximately 82% reported that they would consent to have their medical records accessed for research. Conclusions: This study demonstrated the feasibility of leveraging SEER registries to recruit a geographically and racially diverse group of cancer survivors. Impact: Central cancer registries are a source of high-quality data that can be utilized to conduct population-based cancer survivor studies.
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U2 - https://doi.org/10.1158/1055-9965.EPI-20-0153
DO - https://doi.org/10.1158/1055-9965.EPI-20-0153
M3 - Article
C2 - 32651214
VL - 29
SP - 1699
EP - 1709
JO - Cancer Epidemiology Biomarkers and Prevention
JF - Cancer Epidemiology Biomarkers and Prevention
SN - 1055-9965
IS - 9
ER -