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Early Detection Research Network Registry for Hereditary Cancer

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Lynch, HenryCreighton University
Lynch, HenryCreighton University
UNKNOWN
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 (http://medicine2.creighton.edu/EDRN-Registry). 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.


32nd SC Meeting
Thank you to everyone who made the 32nd EDRN Steering Committee meeting a success. The next event is the 10th EDRN Scientific Workshop from March 6-8, 2018 in Bethesda, MD. More information about this Workshop will be sent soon. Click here to view the flyer.
Announcement



EDRN Founder Honored

Dr. Sudhir Srivastava was honored with the Distinguished Service Award from the American Pancreatic Association at the group's annual meeting this year, for his outstanding commitment to pancreatology.