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Natural History Study of Medullary Thyroid Cancer in Children and Adults

This study is observing how medullary thyroid cancer (MTC), a rare type of thyroid cancer, develops over time in children and adults. Researchers are especially interested in MTC that is part of a condition called Multiple Endocrine Neoplasia 2 (MEN2), which is often caused by a genetic change (mutation) in the RET gene. The study aims to understand how MTC grows and changes, and what molecular pathways (how cells work) are involved. You may be able to join if you have MTC confirmed by a doctor, or if you have a diagnosis of MEN2A or MEN2B. The study will look at how fast tumors grow and change over a period of 5 years.

Study design
This is an observational study, meaning researchers will watch how MTC progresses naturally. It plans to enroll 259 participants.
What's involved
You would need to be able to travel to the NIH and undergo evaluations as part of the study.
Compensation
Not stated in the trial record.
Follow-up
The study will measure tumor growth and molecular changes over 5 years.

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NCT01660984

Natural History Study of Children and Adults With Medullary Thyroid Cancer

Recruiting
Not specifiedAges 4+Observational
National Cancer Institute (NCI)
~259 participants
Updated 2026-08-27 on ClinicalTrials.gov

At a glance

Recruiting sites
1 of 1 listed site is recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Study growth rate of primary and metastatic tumor lesions
Measured over 5 years
+1 more outcome measured

Conditions

Medullary Thyroid Cancer

Explore related trials

Multiple Endocrine NeoplasiaThyroid Gland Medullary Carcinoma

Where it's being run

1 sites across 1 states
Maryland1

Study leadership

  • John W Glod, M.D. · PRINCIPAL_INVESTIGATOR · National Cancer Institute (NCI)

Who to contact

Andrea N Lucas
[email protected]
(240) 702-4653
Email the study team

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Do you actually qualify for this trial?

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Eligibility criteria

Inclusion

Patients must have histologically or cytologically confirmed MTC, confirmed by the Laboratory of Pathology, NCI OR Confirmation of MEN2A or MEN2B diagnosis, regardless of presence of MTC.
Performance Status: Ability to travel to the NIH and to undergo evaluations to be performed on this protocol.
Informed Consent: Ability of patient or their legal guardian (if the patient is \<18 years old) to understand and willing to sign a written informed consent document.
Prior and current therapy: For the purpose of this study subjects who have not previously received medical or surgical treatment, patients, who have previously received medical or surgical treatment, and subjects who are currently receiving medical treatment and/or radiation for MEN 2 related manifestation(s) will be eligible. Prior and current treatment for MEN 2 related manifestations will be recorded at trial entry and throughout the study.
Patients must have a primary care provider (for example a primary oncologist or endocrinologist) who can provide and coordinate the medical care for the patient.
Must be a parent or primary caregiver of a patient (\< 21) who has a histologically or cytologically confirmed MTC or who have MEN2 (regardless of MTC status).
Ability to understand and be willing to sign a written informed consent document.

Exclusion

In the opinion of the investigator the patient is not able to return for follow-up visits or obtain required follow-up studies.

What this trial measures

  • Study growth rate of primary and metastatic tumor lesions5 years

    Characterized features will be described and presented.

  • Study molecular pathways altered in MTC5 years

    Characterized features will be described and presented.