Multiple Endocrine Neoplasia type 1 (MEN1) Recommendations for patients

PATIENT MATERIALS

English

The Multiple Endocrine Neoplasia type 1 (MEN1) Recommendations provide patient-focused guidance for the diagnosis, surveillance, and management of MEN1, a rare inherited endocrine tumour syndrome. The recommendations are based on an international Delphi consensus involving 81 experts and resulted in 55 evidence-graded statements covering parathyroid, pituitary, and gastro-entero-pancreatic manifestations, as well as less common MEN1-associated tumours.

 

The document outlines best-practice approaches to lifelong care, including indications and timing for surgery, biochemical and imaging surveillance schedules for adults and children, genetic testing criteria, and the importance of specialist-centre management. It is presented as a patient-accessible summary compiled by the European Multiple Endocrine Neoplasia Alliance (EMENA) to support informed, shared decision-making between patients, families, and expert care teams.

Note: Resource summaries and translations into relevant languages were produced with the assistance of ChatGPT.