Multiple Endocrine Neoplasia Clinic

Physicians with the Endocrine Center operate registries designed to collect information on rare tumors. Registries can help doctors learn more about the disease's biology, uncover risk factors, track the long term impact of treatment and ultimately improve patient care.  Registries affiliated with the MEN clinic include the Endocrine Neoplasia Registry and the Medullary Thyroid Cancer 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 2 (MEN2) including MEN2A, MEN2B, or familial medullary thyroid cancer (FMTC)
• 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.

Contact us

For more information about this study, please contact:

Danielle Z. Shojaie
Research Study Coordinator
MD Anderson Cancer Center
Phone: 713-792-7642
Fax: 713-745-1462
Email: genr@mdanderson.org

Medullary thyroid cancer (MTC) is a rare disease, with only about 1,000 diagnoses in the U.S. each year. With such a small patient population, it is difficult for researchers to study the condition.

The Medullary Thyroid Cancer Registry (MTCR) addresses this challenge by collecting medical information, family history and perspectives from people around the world impacted by MTC. Participants include those with MTC or a related condition, as well as people with a family history of these conditions.

Information from the registry may contribute to researchers’ understanding of the disease and ultimately improve clinical care.

Who is eligible for this study?

The registry examines both types of MTC: hereditary disease, which is inherited from a parent; and sporadic disease, which is not passed down within families.

We are interested in enrolling individuals from all ages and all disease phases who meet one of the following criteria:

• People with confirmed or suspected diagnosis of medullary thyroid carcinoma, either hereditary or sporadic
• People from families with a confirmed or suspected diagnosis of Multiple Endocrine Neoplasia 2A or 2B (MEN2A or MEN2B) or familial medullary thyroid cancer

Everyone who belongs to one of these categories is invited to participate in the registry, including healthy individuals, cancer survivors and MTC patients in active treatment.

What do I have to do if I join the registry?

Individuals participating in the study will complete questionnaires about their experience with MTC and/or MEN2. MD Anderson patients will be asked to give us permission to access their medical records.

Depending on whether the patient’s disease is hereditary or sporadic, study organizers may invite participants to join other, optional study activities. These include:

• Donating a sample of blood, saliva, and/or tumor tissue to be used for research
• Periodically taking questionnaires on MTC patient perspectives
• Sharing information about the registry with family members
• Joining other optional research opportunities

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

Join the study

If you have questions about the MTCR or want to join the study, please email us at genr@mdanderson.org.