Endocrine

Multiple Endocrine Neoplasia Type 1

Also known as MEN1, Wermer syndrome, menin mutation, multiple endocrine neoplasia

Multiple Endocrine Neoplasia Type 1 is an autosomal dominant tumour predisposition syndrome caused by mutations in the MEN1 tumour suppressor gene encoding menin, characterised by the development of parathyroid adenomas (causing hyperparath

ORPHA:652 ↗Gene MEN1Prevalence 2–10 per 100,000Onset Usually third to fourth decade; range from childhood to seventh decadeAutosomal dominant

27

studies recruiting now

as of 7 Sept 2026

312

studies registered in total

as of 7 Sept 2026

8

countries with a recruiting site

as of 7 Sept 2026

4 May 2025

most recent study posted

among recruiting studies

Recruiting trials

Showing the 5 most recently updated recruiting studies, as recorded 7 Sept 2026. Live status on each study page.

See all 27 recruiting studies

Where recruiting studies are running

Countries with at least one recruiting site among the studies above, 7 Sept 2026. Tap a country to search trials there.

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Patient organisations

Association for Multiple Endocrine Neoplasia DisordersPatient association
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Registry: International MEN1 Registry · Join ↗. Registries connect patients to researchers and often hear about trials first.

About Multiple Endocrine Neoplasia Type 1

Multiple Endocrine Neoplasia Type 1 is an autosomal dominant tumour predisposition syndrome caused by mutations in the MEN1 tumour suppressor gene encoding menin, characterised by the development of parathyroid adenomas (causing hyperparathyroidism in nearly all affected individuals), entero-pancreatic neuroendocrine tumours, and pituitary adenomas, alongside a range of less frequent non-endocrine manifestations. Parathyroid disease is the most penetrant manifestation and is usually the first to appear, with pancreatic neuroendocrine tumours, particularly gastrinomas causing Zollinger-Ellison syndrome, representing the principal cause of morbidity and mortality. Lifelong surveillance with periodic biochemical and imaging assessments is the cornerstone of management due to the multifocal and metachronous nature of tumour development.

Common clinical features

Hypercalcaemia due to primary hyperparathyroidism (nearly universal)Peptic ulcer disease and secretory diarrhoea (gastrinoma/Zollinger-Ellison)Symptoms of hypoglycaemia (insulinoma)Acromegaly or hyperprolactinaemia from pituitary adenomaRecurrent kidney stones (nephrolithiasis)Cushing syndrome from adrenal or ectopic ACTH-secreting tumoursFacial angiofibromas, collagenomas, and lipomas (cutaneous manifestations)Carcinoid tumours of the thymus or bronchus

From Orphanet’s phenotype annotations (CC BY 4.0). Not a complete list.

Before you apply

Things trial teams commonly ask about for Multiple Endocrine Neoplasia Type 1. Not eligibility rules; those are set by each study.

  • Confirmed pathogenic MEN1 germline variant or clinical MEN1 diagnosis (two of three main tumour types) is required for enrolment in hereditary NETs trials; genetic counselling records are valuable.
  • Active tumour burden (size, number, and function of current lesions) is assessed at screening; recent cross-sectional imaging (CT or MRI) and functional imaging (68Ga-DOTATATE PET) within three to six months are required.
  • Prior surgical history (parathyroidectomy, pancreatic resection, pituitary surgery) significantly affects eligibility; provide a complete operative history with pathology reports.

Related conditions

Information, not medical advice. Trial listings are shown as recorded on ClinicalTrials.gov; whether any study is right for you is a decision for you and your clinicians, and eligibility is decided by each research team. Disease information from Orphanet (CC BY 4.0).