Association for Multiple Endocrine Neoplasia Disorders

What is the purpose of this study?

The goal of the Genetics of Endocrine Neoplasias Registry (GENR) is to gain a better understanding of the genetic basis of endocrine tumors and cancers. We are interested in studying tumors of the thyroid, parathyroid, pituitary, and adrenals, as well as certain other rare tumors (neuroendocrine and carcinoid tumors/cancers and paragangliomas). Endocrine tumors are rare which has made it difficult for researchers to study them. The registry we are building is meant to 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.


Who is eligible for this study?

We are interested in enrolling people from families with a confirmed or suspected condition that causes an increased risk for endocrine tumors and cancers. For example:

  • Individuals with 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).
  • Individuals with a known endocrine neoplasia susceptibility gene mutation
  • First degree relatives (brother, sister, parent, or child) of individuals with known endocrine neoplasia susceptibility gene mutation
  • Individuals with multiple different tumors, at least one of which is an endocrine tumor
  • Individuals with an endocrine tumor with two or more first or second degree relatives with an endocrine tumor

We are enrolling people of all ages. We are including healthy individuals, cancer survivors, and patients actively being treated for cancer.


What do I have to do if I participate in this study?

Individuals participating in the study will be asked to complete questionnaires about their medical and family histories. Other parts of the study that are optional 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
  • Be re-contacted periodically, so medical and family history information can be updated and to be notified of other research opportunities

How long will this study go on?

At this time this study is open-ended. We plan to continue to recruit and follow individuals as long as possible.

For more information about this study, please contact the Research Study Coordinator at MD Anderson, Chardria Trotter