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Early Detection Research Network Registry for Hereditary Cancer

Lynch, HenryCreighton University
Lynch, HenryCreighton University

No involved investigator sites defined.

Breast and Gynecologic Cancers Research

The EDRN High Risk Registry (HRR)recruits individuals that carry germline mutations for hereditary cancer syndromes, who are willing to participate in biomarker studies. Recruitment is pursued through distribution of recruitment packets. The recruitment packet includes a cover letter, EDRN HRR brochure, consent form, HIPAA authorization, and baseline questionnaire. Upon completion of enrollment materials, each Registry member is provided a Certificate of Confidentiality, which has been issued by the NCI for the EDRN HRR. The EDRN HRR has a website ( It provides eligibilty, enrollment educational information for individuals who are at high risk of developing hereditary cancer. The EDRN HRR newsletter is published twice each year. These are distributed to EDRN HRR members on an annual basis. Follow-up questionnaires are sent to Registry participants each year. An EDRN HRR database has been established to store demographic data, personal and family history of cancer diagnoses, personal smoking history, female specific history, as well as cancer prevention, detection and treatment information collected on questionnaires. All EDRN HRR questionnaires and database use the EDRN CDEs.

To maintain and expand our High Risk Registry of carriers of cancer genetic syndromes who are willing to participate in biomarker studies.

There are currently no biomarkers annotated for this protocol.

No datasets are currently associated with this protocol.

EDRN Orientation Meeting 2016
The In-person EDRN Orientation Meeting will take place Wednesday, October 19-Friday, October 21, 2016 in Bethesda, MD. More information such as meeting registration and hotel reservations can be found here.