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
Clinical Trial Eligibility Tips
What to know before applying to Multiple Endocrine Neoplasia Type 1 trials.
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.
Patient Resources
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Related Rare Diseases
Multiple Endocrine Neoplasia Type 2
MEN2
EndocrinePheochromocytoma and Paraganglioma
PPGL
EndocrineVIPoma
Verner-Morrison syndrome
EndocrineGlucagonoma
Glucagon-secreting pancreatic tumor
EndocrineCushing Disease
ACTH-secreting pituitary adenoma
EndocrineAcromegaly
Growth hormone excess