ORPHA:1332
Medullary thyroid carcinoma
Also known as: MTC
Clinical definition (Orphanet)
Medullary thyroid carcinoma (MTC) is developed from thyroid C cells that secrete calcitonin (CT).
How rare: 1-9 / 100 000 — about one to nine people per hundred thousand.
Is anyone studying this?
28,627
28,627 papers — among the better-studied rare conditions, though still a fraction of common-disease literature (breast cancer: over 700,000). Median papers in the last 10 years for a rare disease in this dataset (publications denominator n=183) is 38.
28,627 papers since the earliest indexed year in this search — median last-10-year count for a rare disease in this dataset is 38 (publications denominator n=183).
15,039 in the last 10 years · medium confidence · 99.7th percentile (publications denominator)
Is a treatment being tested?
136
trials for this specific condition
136 interventional trials matched this specific condition name; 26 currently recruiting in our sample.
Data as of 26 July 2026
136 interventional trials — more than 59.2% of diseases in the trials denominator have none at all (151 of 255; this disease is at the 97.5th percentile).
medium confidence · 97.5th percentile (trials denominator)
Do we know what causes it?
Not yet — the cause hasn't been pinned down in GenCC.
No strong gene–disease assertion joined for this Orphanet entity.
Who's working on it?
1,315
Distinct author names in 200 sampled papers — named people below.
Who's working on it?
People publishing on this condition (sampled Europe PMC records). Affiliation is the most recent found in that sample.
- 01Elisei R5 papers · 2026
Department of Clinical and Experimental Medicine, Endocrinology Unit, University of Pisa, Pisa, Italy.
Papers in Europe PMC - 02Giovanella L5 papers · 2026
Department of Nuclear Medicine, University Hospital of Zürich, Zürich, Switzerland.
Papers in Europe PMC - 03Matrone A5 papers · 2026
Department of Clinical and Experimental Medicine, Endocrinology Unit, University of Pisa, Pisa, Italy.
Papers in Europe PMC - 04Chen J4 papers · 2026
Department of General Medicine, Shazi Health Center, Liuzhou, Guangxi Zhuang Autonomous Region, China.
Papers in Europe PMC - 05Gambale C4 papers · 2026
Department of Clinical and Experimental Medicine, Unit of Endocrinology, University-Hospital of Pisa, Pisa, Italy.
Papers in Europe PMC - 06Prete A4 papers · 2026
Department of Clinical and Experimental Medicine, Unit of Endocrinology, University-Hospital of Pisa, Pisa, Italy.
Papers in Europe PMC - 07Torregrossa L4 papers · 2026
Department of Surgical, Medical and Molecular Pathology, Pathology Unit, University of Pisa, Pisa, Italy.
Papers in Europe PMC - 08Ugolini C4 papers · 2026
Department of Surgical, Medical and Molecular Pathology, Pathology Unit, University of Pisa, Pisa, Italy.
Papers in Europe PMC - 09Zhang Y4 papers · 2026
Department of Ultrasound, The First Affiliated Hospital of Hunan Normal University (Hunan Provincial People's Hospital), Changsha, China.
Papers in Europe PMC - 10Agarwal S3 papers · 2026
Department of Pathology, All India Institute of Medical Sciences, New Delhi, India. Electronic address: drshipra0902@gmail.com.
Papers in Europe PMC
Recruiting interventional trials
Trials testing a treatment from the matched ClinicalTrials.gov set
136 interventional trials matched after quoted-phrase search and title/condition post-filter.
- NCT06161532·Sacituzumab Govitecan With or Without Atezolizumab Immunotherapy in Rare Genitourinary Tumors (SMART) Such as High Grade Neuroendocrine Carcinomas, Adenocarcinoma, and Squamous Cell Bladder/Urinary Tract Cancer, Renal Medullary Carcinoma and Penile C...
- NCT06277180·68Ga-TCR-FAPI PET/CT Guided Precision Surgery for MTC
- NCT06141369·Treatment of Advanced Endocrine Tumor With Iindividualized mRNA Neoantigen Vaccine (mRNA-0523-L001)
- NCT06440850·Vemurafenib and Cobimetinib for the Treatment of Patients With High Risk Differentiated Thyroid Carcinoma With BRAFV600E Mutation
- NCT06639191·[177Lu]Lu-AKIR001 First-in-human Study
- NCT07661420·211At-MABG in Adults With Advanced Neuroendocrine Cancers
- NCT03866382·Testing the Effectiveness of Two Immunotherapy Drugs (Nivolumab and Ipilimumab) With One Anti-cancer Targeted Drug (Cabozantinib) for Rare Genitourinary Tumors
- NCT03892993·Patient Decision Aid in Supporting Decision-Making About When to Start or Stop New Drugs, Join Clinical Trials, or Continue Active Surveillance in Patients With Medullary Thyroid Cancer and Their Caregivers
- NCT06121271·Trial of Lu-177 DOTATATE (Lutathera®) in Unlicensed Indications
- NCT07529080·Personalized Cancer Support (Thrive Track) to Manage the Emotional Needs of Young Adults With Thyroid, Melanoma and Testicular Cancer, PerCS-YA Trial
- NCT07545837·Health and Wellness Coaching to Improve Adherence to Healthy Habits and Treatment Plans in Papillary and Follicular Thyroid Cancer Survivors
- NCT07612293·STAGE-MTC Trial Thyroid Lobectomy With Ipsilateral Central Neck Dissection
- NCT07438626·Phase II Trial of Sacituzumab Tirumotecan in Patients With SMARCB1-Deficient Renal Medullary Carcinoma
- NCT06848920·Study of Sinibolimab Combined with Lenvatinib As Neoadjuvant Therapy for Locally Advanced Unresectable Differentiated Thyroid Carcinoma
- NCT06860971·A Study of AL2846 Capsule Versus Placebo in the Treatment of Advanced Radioiodine-Refractory Differentiated Thyroid Carcinoma
Observational and natural-history studies
45 observational studies match this condition. These do not test a treatment and are not counted in the interventional-trial headline, but they are genuine research: natural-history work often defines the endpoints needed for a future rare-disease trial, and families may be able to enroll.
Recruiting or not-yet-recruiting
- NCT04216732·Natural History of Medullary Thyroid Cancer to Inform Advanced Disease Management
- NCT01109420·Clinical and Genetic Studies in Familial Non-medullary Thyroid Cancer
- NCT05994365·Study of Anlotinib Hydrochloride Capsules in the Treatment of Locally Advanced or Metastatic Radioiodine-Refractory Differentiated Thyroid Carcinoma
- NCT05575440·Evaluation of 18F-TFB PET/CT Scan in Patients With Differentiated Thyroid Cancer
- NCT06852144·PET-TC in Thyroid Evaluation
- NCT06079723·A Detailed Look At What Patients Experience In Medullary Thyroid Cancer Clinical Study
- NCT07048964·A Prospective Cohort Study of Pralsetinib or Anlotinib in the Treatment of Locally Advanced and/or Metastatic Medullary Thyroid Carcinoma With RET Gene Mutations
- NCT07621146·A Comparison of [68Ga]DOTATATE and [18F]AmBF3TATE for the Staging and Assessment of Neuroendocrine Malignancies
- NCT01511393·An Active Surveillance Program for Cases of Medullary Thyroid Carcinoma (MTC)
- NCT06523582·Genetic Bases of Neuroendocrine Neoplasms in Mexican Patients
- NCT07142005·Cultural Adaptation of an Educational Tool in Medullary Thyroid Cancer
- NCT07259304·Social Health, Activity Behaviors, and Quality of Life Among Young Adult Cancer Survivors
- NCT01660984·Natural History Study of Children and Adults With Medullary Thyroid Cancer
- NCT07713901·Database Linkage Study to Evaluate the Risk of Medullary Thyroid Carcinoma
Where to find support
We do not yet link condition-specific patient organisations. These umbrella groups support undiagnosed and ultra-rare families:
India — NPRD
Last verified 2026-07-26This ORPHAcode is not on our curated NPRD list (direct or Mondo-parent match). That does not decide clinical eligibility; families in India should ask a notified Centre of Excellence about current coverage.
Hand-curated for this project. ORPHAcode mappings are best-effort and may be incomplete or imprecise for umbrella categories. Parent (Mondo) matches mean the policy lists a broader category — confirm eligibility with a Centre of Excellence. Financial entitlements summarised from public policy statements and may change. This is not official government guidance.
How we counted this
Europe PMC query (preferred label + any corrected label + Orphanet and Mondo exact synonyms, stoplisted; unioned with resolved MeSH labels when available). UMLS / OMIM / NCIT cross-references are stored below but are not added to the query string.
"Medullary thyroid carcinoma" OR "C cell carcinoma" OR "carcinoma of parafollicular cell" OR "carcinoma, C-cell, malignant" OR "medullary carcinoma" OR "medullary carcinoma of the thyroid" OR "medullary carcinoma of the thyroid gland" OR "medullary carcinoma of thyroid" OR "medullary carcinoma of thyroid gland" OR "medullary thyroid cancer" OR "medullary thyroid gland carcinoma" OR "parafollicular cell carcinoma" OR "thyroid gland medullary cancer" OR "thyroid gland medullary carcinoma" OR "thyroid gland neuroendocrine carcinoma" OR "thyroid medullary carcinoma"
ClinicalTrials.gov query (quoted phrases + MeSH via query.cond, plus recall-expansion terms when used):
"Medullary thyroid carcinoma" OR "C cell carcinoma" OR "carcinoma of parafollicular cell" OR "carcinoma of the parafollicular cell" OR "carcinoma, C-cell, malignant" OR "medullary carcinoma" OR "medullary carcinoma of the thyroid" OR "medullary carcinoma of thyroid" OR "medullary carcinoma of the thyroid gland" OR "medullary carcinoma of thyroid gland" OR "medullary thyroid cancer" OR "medullary thyroid gland carcinoma" OR "parafollicular cell carcinoma" OR "thyroid gland medullary cancer" OR "thyroid gland medullary carcinoma" OR "thyroid gland neuroendocrine carcinoma" OR "thyroid medullary carcinoma" OR "thyroid gland follicular carcinoma" OR "differentiated thyroid carcinoma" OR "thyroid gland adenocarcinoma"
Interventional trials matched via: phrase (mesh = registered under a MeSH descriptor no name phrase would catch; recall-expansion = gene / selected parent terms used only for trials).
Study-type breakdown: 136 interventional · 45 observational · 6 expanded access. Only interventional studies enter the trial headline.
Cross-references (from Mondo): UMLS:C0238462 NCIT:C3879
Query health: ok — strategies attempted: phrase, recall-expansion; with hits: phrase, recall-expansion
Run this search on ClinicalTrials.gov
Synonyms dropped by stoplist: MTC
Confidence reasoning
- Preferred label is multi-word and distinctive
- 1 synonym(s) dropped by stoplist (may under-count)
- No label/synonym collisions with other diseases in this corpus