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The Medullary Thyroid Carcinoma (MTC) Registry Consortium* is partnering with the American Thyroid Association (ATA) to create a registry (list) of all new cases of MTC diagnosed in the United States over the next 10-15 years (the MTC Registry). The purpose of the MTC Registry is to help better understand what risk factors are associated with the development of MTC.

The ATA was asked to monitor the development of the registry by the U.S. Food and Drug Administration so that the MTC Registry Consortium would have an independent, professional medical society involved. Select ATA member experts have been asked to provide their experience and knowledge related to medullary thyroid cancer.  The ATA has no oversight or management over the registry or study. The ATA’s involvement is to provide thyroid cancer expertise only. Please be assured that the MTC Registry adheres to all Health Insurance Portability and Accountability Act (HIPAA) related regulations in protecting your medical information.

Medullary thyroid cancer is a rare neuroendocrine tumor that arises from the parafollicular calcitonin producing C-cells in the thyroid gland. The cause of medullary thyroid cancer is known in about 25% of cases which develop as a result of a RET oncogene mutation in the setting of multiple endocrine neoplasia syndromes. However, the cause of medullary thyroid cancer is unknown in the remaining 75% of patients.

Risk factors being evaluated by the MTC registry include the patient’s family history of cancer, results of genetic testing, radiation exposure, lifestyle factors (such as smoking and alcohol use), and other medical conditions (such as diabetes, hypothyroidism, hyperthyroidism and obesity). Since one of the primary goals of the MTC Registry is to determine if some of the medicines used to treat diabetes or weight management could possibly be associated with the development of MTC, a study is being conducted to help collect this data. Patients who to participate in this study may be asked to provide information on certain medications that they have used prior being diagnosed with MTC.

The patient’s participation in the study is completely voluntary. The patient’s decision whether to participate will not affect his or her ability to receive medical care. There are no medical tests or doctor visits needed to participate. Participation in the study involves only completing surveys which usually take about 20-30 minutes by phone. As noted above, the purpose of this project is simply to collect data to better understand risk factors associated with the development of MTC. Potential study participants will be contacted by the MTC registry team directly, not by the ATA. Potential study participants not wanting to participate can contact the United BioSource Corporation (UBC) team at the number listed below to prevent additional contact attempts.

While the ATA is providing expertise in thyroid cancer, the MTC Registry and patient survey is being funded by a group of pharmaceutical companies (MTC Registry Consortium) and is being managed by a private clinical research organization, UBC, on behalf of the participating pharmaceutical companies.

How to Join the Registry

If you have been asked to participate and are interested or have any questions about the study, please contact the MTC Registry team at UBC toll-free at 877-739-2576, Monday through Friday between 9:00 am and 5:00 pm Central time.

* Disclaimer: Medullary Thyroid Carcinoma (MTC) Registry Consortium current member sponsors include Novo Nordisk, AstraZeneca, Eli Lilly and GlaxoSmithKline.