MD Anderson’s Multiple Endocrine Neoplasia (MEN) Clinic offers screening, surveillance, diagnosis and disease management for individuals affected by multiple endocrine neoplasia syndromes types 1 and 2, hereditary paraganglioma/pheochromocytoma syndromes and related conditions.
The clinic serves individuals who have been diagnosed with a hereditary endocrine disorder. It also works with those who think they may have an undiagnosed hereditary endocrine disorder based on personal or family history.
MD Anderson’s MEN Clinic has one of the most experienced teams in the world in treating hereditary endocrine disorders. Care is provided by a group of renowned experts from many specialties. Working closely with each other and you, our physicians customize your treatment plan to deliver the most advanced therapies with the fewest side effects. This individualized care is important because hereditary endocrine disorders can affect many processes and parts of the body.
If surgery is needed, our surgeons have extensive experience in procedures proven to treat endocrine neoplasias. If a hereditary endocrine neoplasia syndrome runs in your family, we offer comprehensive genetic testing and counseling to help you understand and manage your risk.
And as one of the leaders in MEN disorders, we are constantly researching new ways to treat MEN-related diseases. This includes conducting cutting-edge clinical trials, which provide patients with access to treatments that may not be available from other programs.
Endocrine Neoplasia Registry
Endocrine tumors are rare, which has made it difficult for researchers to study them. The goal of the Genetics of Endocrine Neoplasias Registry (GENR) is to gain a better understanding of the genetic basis of these endocrine tumors and cancers.
We are interested in studying tumors of the thyroid, parathyroid, pituitary, and adrenal glands, as well as certain other rare tumors (neuroendocrine and carcinoid tumors/cancers and paragangliomas).
The registry will collect medical and family history information on people from all over the world who have similar rare conditions. Having many people involved not only helps us learn more about the disease, but it also helps to support future research studies on genetic, medical, and psychosocial factors that impact health outcomes.
At this time, the Genetics of Endocrine Neoplasias Registry is open-ended. We plan to continue to recruit and follow individuals as long as possible.
How do I participate?
Individuals participating in the study will be asked to complete questionnaires about their medical and family histories. Optional registry activities include:
- Signing a release for medical records
- Donating a sample of blood, saliva, and/or tumor tissue to be used for research
- Sharing information about the registry with family members
- Being re-contacted periodically to update medical and family history information, and to be notified of other research opportunities
Who is eligible for the registry?
We are enrolling people from families with a confirmed or suspected condition that causes an increased risk for endocrine tumors and cancers, including:
- Multiple endocrine neoplasia type 1 (MEN1), MEN2A, MEN2B, familial medullary thyroid cancer (FMTC), or hereditary pheochromocytoma/paraganglioma (e.g. SDHB, SDHD, SHDC or VHL mutation)
- People with a known gene mutation for endocrine neoplasia susceptibility
- First-degree relatives (brother, sister, parent, or child) of individuals with a known gene mutation for endocrine neoplasia susceptibility
- Individuals with multiple different tumors, at least one of which is an endocrine tumor
- Individuals with an endocrine tumor who have two or more first or second degree relatives with an endocrine tumor
The registry accepts people of all ages and includes healthy individuals, cancer survivors, and patients under active cancer treatment. You do not have to be an MD Anderson patient to participate in the registry.
Please fill out our online registry form and someone will contact you about participating in the registry.
For more information about this study, please contact:
Research Study Coordinator
MD Anderson Cancer Center