Registry for Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2

Multiple Endocrine Neoplasia Syndromes

Multiple Endocrine Neoplasia Syndromes, MEN1, MEN2, Relatives, Database, Questionnaires, Surveys

Objectives: To contribute new and prospective data to our existing database library for patients with MEN1 and MEN2 at The University of Texas M.D. Anderson Cancer Center.

Previously followed MEN1 and MEN2 patients at M.D. Anderson Cancer Center will be mailed an introductory letter and a "consent to be contacted" form to determine whether they are interested in participating in the study. New MEN1 and MEN2 patients seen in clinic at M.D. Anderson Cancer Center will be asked if they wish to learn more about this study. Interested patients will also be asked to distribute the introductory letter and consent to be contacted form to their blood relatives. Printed materials regarding this study will only be mailed to non-MDACC individuals with the expressed written or verbal permission from a consenting MDACC patient. All interested individuals will return the signed "consent to be contacted" form to the PI. Consented individuals will be interviewed by phone and/or mail to obtain updated family and medical history specific to their diagnosis of either MEN1 or MEN2. To verify accuracy of medical data collected, all non-MDACC participants will be asked if they consent to have their off-site medical records released to us for review. There will be no treatment or collection of blood or tissue in this study. Although this study presents minimal risk to participants, participant consent will be obtained due to the need to obtain permission to make contact with patients and their families. Approximately 1500 patients and their relatives will be included in this study. This will be done on an inpatient and outpatient basis.

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