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.
For more information about this study, please contact:
Research Study Coordinator
MD Anderson Cancer Center
- Genetic Discrimination Laws
- Gathering Information for a Cancer-Focused Family History
- Multiple Endocrine Neoplasia Type 2 (MEN2): A Guide for Families
- Genetics Testing for Patients with Medullary Thyroid Cancer
- Pheochromocytoma and Paraganglioma: A Guide to Genetic Testing
- Questions and Answers About Hyperparathyroidism