The University of North Carolina Cancer Survivorship Cohort: A Resource for Collaborative Survivorship Research

Abstract

Background: Rapid growth in the number of US cancer survivors drives the need for ongoing research efforts to improve outcomes and experiences after cancer. In this study, we describe the University of North Carolina (UNC) Cancer Survivorship Cohort, a medical center-based cohort of adults with cancer that integrates medical record-abstracted cancer information, patient-reported outcomes, and biological specimens.

Methods: Participants ages 18+ were recruited from UNC oncology clinics between April 2010 and August 2016. After enrollment, participants completed questionnaires on a range of topics including demographics, health history, healthcare access and utilization, quality of life, and symptoms. Blood samples and tumor tissue specimens were collected and processed by study staff, and cancer characteristics and other clinical data were abstracted from electronic medical records. Participants consented to recontact for future studies and linkage of their data with other data resources.

Results: In total, 3,999 participants with a cancer diagnosis were enrolled in the cohort. The most common cancer types among those enrolled included breast (N = 866), uterine (N = 458), colorectal (N = 300), prostate (N = 296), and head and neck (N = 248) cancers. Blood specimens were collected for 3,027 participants (76%). Additional participants without cancer (N = 1,299) were also enrolled, and the majority (62%) provided biospecimen samples.

Conclusions: We encourage a wide collaboration with investigators across institutions seeking to advance research in cancer survivorship. Procedures are in place to support proposals for use of existing or linked data and for proposals that require participant recontact or analysis of biospecimens.

Impact: The UNC Cancer Survivorship Cohort is a unique resource for cancer survivorship research.