Registry for Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2

Brief Title

Registry for Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2

Official Title

Registry for Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2

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.
    


Study Type

Observational


Primary Outcome

Contribution of New and Prospective Data to Existing Database Library for Patients with MEN1 and MEN2 by Completion of Health Questionnaires


Condition

Multiple Endocrine Neoplasia Syndromes

Intervention

Questionnaires

Study Arms / Comparison Groups

 Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2
Description:  Consented individuals will be interviewed by phone and/or mail to obtain medical history specific to their diagnosis of either MEN1 or MEN2.

Publications

* Includes publications given by the data provider as well as publications identified by National Clinical Trials Identifier (NCT ID) in Medline.

Recruitment Information


Recruitment Status

Behavioral

Estimated Enrollment

1500

Start Date

September 5, 2001

Completion Date

September 1, 2027

Primary Completion Date

September 1, 2026

Eligibility Criteria

        Inclusion Criteria:

          1. Registered MDACC patients diagnosed with MEN1 or MEN2.

          2. 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.
      

Gender

All

Ages

N/A - N/A

Accepts Healthy Volunteers

Accepts Healthy Volunteers

Contacts

Nancy D. Perrier, MD, 713-792-6161, [email protected]

Location Countries

United States

Location Countries

United States

Administrative Informations


NCT ID

NCT03048279

Organization ID

RCR01-485


Responsible Party

Sponsor

Study Sponsor

M.D. Anderson Cancer Center


Study Sponsor

Nancy D. Perrier, MD, Principal Investigator, M.D. Anderson Cancer Center


Verification Date

May 2019