Utilizing SEER Cancer Registries for Population-Based Cancer Survivor Epidemiologic Studies: A Feasibility Study

Abstract

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.

Project Forward: A Population-Based Cohort Among Young Adult Survivors of Childhood Cancers

“…Strengths of this study include the ethnically diverse, recently diagnosed, population-based sample with rich survey data. Our response rate was similar to other registry-based epidemiologic studies of cancer survivorship, despite the challenges of recruiting a younger, more geographically mobile population with a longer time since diagnosis ( 53 , 54 ). We were able to address response bias by weighting our analyses on demographic factors related to response (eg, sex).…”

Comparison of Young Adult Female Cancer Survivors Recruited from a Population-Based Cancer Registry to Eligible Survivors

“…The overall difference in recruitment between African-American and white women was small, but similar to other registry-based studies (8,11,15,17,18). Although African-American women were more likely to participate than Hispanic women, African-American women were a larger proportion of the eligible population and therefore, more African-American women did not participate.…”

“…Typically, we had already left messages at the correct phone number, indicating that call screening may prevent even desired contact. Some studies define cancer survivors as inaccessible after 7 phone calls or fewer (11,15,16), which may affect participation levels. In our study, the median number of calls to eventual study participants was 10 (IQR 4-21), and another registry-based study concluded that up to 15 calls was productive (26).…”

“…However, few publications directly evaluate whether long-term survivors of young adult cancers recruited from population-based registries are representative of the eligible population (8)(9)(10)(11) or examine why eligible survivors are missing from a study population (eg, unable to contact, refusal) by survivor characteristics. The Furthering Understanding of Cancer, Health, and Survivorship In Adult (FUCHSIA) Women's Study is a populationbased study of women's health in female survivors of young adult cancers 2-19 years after diagnosis.…”

Impact of social disparities on 10 year survival rates in paediatric cancers: a cohort study

“… 24 SEER importantly contains data that is valuable for an analysis on a population level to describe survival outcomes including for childhood cancer. 25 The SEER 18 dataset is based on 18 population-based cancer registries from 13 states. 24 After IRB approval (1871434-3), the SEER data was used to analyse paediatric patients (≤19 years old) diagnosed between 1975 and 2016.…”