Registry for Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2
试验速览
- 阶段
- 不适用
- 状态
- 进行中(未招募)
- 入组人数
- 1,500
- 试验地点
- 1
- 主要终点
- Contribution of New and Prospective Data to Existing Database Library for Patients with MEN1 and MEN2 by Completion of Health Questionnaires
研究概览
简要总结
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.
详细描述
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.
研究设计
- 研究类型
- Observational
- 观察模型
- Case Control
- 时间视角
- Prospective
入排标准
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Registered MDACC patients diagnosed with MEN1 or MEN
- •Close relatives of registered MDACC MEN patients.
排除标准
- •1. Individuals who are either non-MDACC registered patients or do not have a close relative who is an MEN patient registered at MDACC.
研究组 & 干预措施
Multiple Endocrine Neoplasia Syndromes: MEN1/MEN2
Consented individuals will be interviewed by phone and/or mail to obtain medical history specific to their diagnosis of either MEN1 or MEN2.
干预措施: Questionnaires (Behavioral)
Close Relatives of Registered MDACC MEN Patients
Participants will be asked to complete a health and family history questionnaire. This questionnaire process may be completed by phone or mail.
干预措施: Questionnaires (Behavioral)
结局指标
主要结局
Contribution of New and Prospective Data to Existing Database Library for Patients with MEN1 and MEN2 by Completion of Health Questionnaires
时间窗: 25 years
次要结局
未报告次要终点
