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Early Detection Research Network Registry for Hereditary Cancer

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Lynch, HenryCreighton University
Lynch, HenryCreighton University

No involved investigator sites defined.

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.


2015 EDRN PI Orientation

The New and Continuing EDRN Principal Investigator Orientation will take place October 15–16, 2015 in Bethesda, Maryland.

Announcement 04/08/2015

Thank you to everyone who made the 29th EDRN Steering Committee Meeting a success. The orientation for new and continuing EDRN PIs will be held October 15-16, 2015 on the NCI campus. More information will be available later this summer.

Announcement