The Carolina Endometrial Cancer Study: A population-based survivor cohort

Endometrial cancer is the 4th most common cancer diagnosed and 6th leading cause of cancer death among United States (U.S.) women. Today, there are more than 891,000 endometrial cancer survivors in the U.S., making it the second largest cancer survivor group among women (after breast). Black women are more likely than White women to have endometrial cancer recur and are twice as likely to die. Disparities in endometrial cancer outcomes are multifactorial; contributors likely include, but are not limited to, higher prevalence of worse-prognosis biologic subtypes, variation in symptom recognition and receipt of guideline-concordant cancer treatment, and differential survivorship care. We propose a comprehensive approach to understanding endometrial cancer outcomes within a population-based survivorship cohort. The Carolina Endometrial Cancer Study (CECS) will prospectively recruit women with newly diagnosed endometrial cancer in North Carolina using the statewide Central Cancer Registry’s rapid case ascertainment program. Within the planned cohort of ~1,700 women, we aim to enroll ~667 Black women. Baseline data collection includes retrieval of tumor paraffin blocks and medical records for detailed diagnostic and treatment history, collection of buccal samples, and administration of questionnaires offered in written, phone, or online formats. We will conduct follow-up interviews every 18 months and retrieve medical records for any additional endometrial cancer treatment or reported disease recurrence. Our aims include: 1) To assess variation in the distribution of endometrial cancer histologic and molecular subtypes that are associated with poor prognosis among Black and White women evaluated by centralized pathology review; 2) To assess variation in presenting symptoms and receipt of guideline-concordant endometrial cancer treatment among Black and White women and; 3) To assess variation in experience and provider assessment of guideline-recommended symptoms for surveillance visits and survivorship care among Black and White women. The proposed cancer epidemiology survivorship cohort uses a population-based platform and combines detailed tumor biology and patient-reported survey data to investigate endometrial cancer biology, medical care, and experience. We collect detailed information on individual-level molecular tumor characteristics; behavioral and lifestyle factors; cancer treatment, follow-up care, and recurrence information abstracted from medical records; and have an established infrastructure to link participant records to administrative insurance claims and area-level social determinants of health and health system factors. The multidisciplinary investigative team and patient advocacy support facilitate investigation of not only the proposed aims, but create a resource and infrastructure for ongoing research to advance the science of endometrial cancer survivorship.