Registry for Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2

Study Overview
=================
Brief Summary
-----------------
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.

Detailed Description
-----------------
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.

Official Title
-----------------
Registry for Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2

Conditions
-----------------
Multiple Endocrine Neoplasia Syndromes

Intervention / Treatment
-----------------
* Behavioral: Questionnaires


Participation Criteria
=================
Eligibility Criteria
-----------------
Inclusion Criteria: Registered MDACC patients diagnosed with MEN1 or MEN2. Close relatives of registered MDACC MEN patients. Exclusion Criteria: 1. Individuals who are either non-MDACC registered patients or do not have a close relative who is an MEN patient registered at MDACC.
Sexes Eligible for Study
-----------------
All

Accepts Healthy Volunteers
-----------------
Accepts Healthy Volunteers

Study Plan
=================
How is the study designed?
-----------------

Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2<br>Consented individuals will be interviewed by phone and/or mail to obtain medical history specific to their diagnosis of either MEN1 or MEN2. | Behavioral: Questionnaires<br>* Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2 Group: Participants interviewed by phone and/or mail to obtain medical history specific to their diagnosis of either MEN1 or MEN2. Close Relatives of Registered MDACC MEN Patients Group: Participants asked to complete a health and family history questionnaire. This questionnaire process may be completed by phone or mail.<br>* Other names: Surveys;|
| Close Relatives of Registered MDACC MEN Patients<br>Participants will be asked to complete a health and family history questionnaire. This questionnaire process may be completed by phone or mail. | Behavioral: Questionnaires<br>* Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2 Group: Participants interviewed by phone and/or mail to obtain medical history specific to their diagnosis of either MEN1 or MEN2. Close Relatives of Registered MDACC MEN Patients Group: Participants asked to complete a health and family history questionnaire. This questionnaire process may be completed by phone or mail.<br>* Other names: Surveys;|

What is the study measuring?
-----------------
Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Contribution of New and Prospective Data to Existing Database Library for Patients with MEN1 and MEN2 by Completion of Health Questionnaires |  | 25 years | 

 Terms related to the study
=================
Keywords Provided by Centre Hospitalier Valida
-----------------
Multiple Endocrine Neoplasia Syndromes, MEN1, MEN2, Relatives, Database, Questionnaires, Surveys