For Researchers

The Carolina Endometrial Cancer Study (CECS) provides important data for integrating tumor biology, lifestyle, social environment, cancer treatment, and other factors to identify contributors to outcomes and inform potential areas for intervention or development.

Study Design

The CECS is a prospective cohort that uses rapid case ascertainment in collaboration with the North Carolina Central Cancer Registry to identify women with newly diagnosed endometrial cancer living in North Carolina. Enrollment began in January 2021 and is ongoing. Eligible participants are sampled to recruit 100% of African American women with an endometrial cancer diagnosis, and an age- and region- matched sample of White women. Endometrial cancer survivors of other races are sampled at their relative distribution within North Carolina.

Recruitment Eligibility

• Female adults aged 20 to 80 at time of diagnosis
• All racial and ethnic groups
• Are fluent in English
• Residents of any of the 100 counties of North Carolina at time of diagnosis
• Newly diagnosed with endometrial cancer since January 1, 2020

Informed Consent

All participants provided informed consent in either English prior to participation. CECS consent materials can be accessed below:

Consent to Participate in Research – CECS

Consent for Biological Specimens – Saliva/Tumor

Consent Addendum for Unencrypted Communication

Consent To Participate in Research – Home Visit Sub-Study

Consent for Biological Specimens – Stool/Vaginal

Questionnaires

Participants are asked to complete surveys on factors related to endometrial cancer risk and prognosis, survivorship, and recurrence at enrollment and approximately 18- and 36-months after diagnosis. Annotated survey instruments and can be accessed below:

Enrollment Questionnaire

• Enrollment Data Dictionary

18-Month Questionnaire

• 18-Month Data Dictionary

36-Month Questionnaire

• 36-Month Data Dictionary

60-Month Questionnaire

• 60-Month Data Dictionary

Home Visit Pilot Questionnaire

• Home Visit Pilot Data Dictionary

Medical Records

Participants are asked for consent to retrieve medical records for initial endometrial cancer treatment and any recurrence. Medical record abstraction forms can be accessed below:

Medical Record Abstraction Form

Medical Records Abstraction Data Dictionary

Biospecimens

Participants are asked for consent to obtain tumor samples from their initial endometrial cancer diagnosis and to provide a mail-based saliva sample for germline DNA. A subset of 50 CECS participants within 90 miles of UNC additionally provided self-sampled gut and vaginal microbiome samples as part of a pilot study. Detailed information can be found here: https://unclineberger.org/cecs/biospecimens/

Centralized Pathology Review Form

Centralized Pathology Review Data Dictionary

Approved Project List

If you are interested in using CECS data for your project, please complete the following forms and email to cecs@unc.edu.

CECS Proposal Form (LOI)

Authorship Proposal Guidelines Form

Data Use Agreement Form

LCCC Rapid Case Ascertainment Acknowledgement