Natural History of MEN-1

MEN1 is a rare hereditary tumor syndrome characterized by predisposition to the development of various endocrine tumors at a young age – resulting in high impact on patient’s quality of life and life expectancy. There clearly is an unmet need for (1) patient reported disease experience, and (2) establishing more insight into prevalence of rare conditions possibly associated with MEN1.

The European MEN1 registry aims to collect clinical data including the prevalence of all (possibly) MEN1 related manifestations, the prevalence of aggressive tumors (locoregional and/or distant metastasis) and patient reported outcomes for all MEN1 patients under care at a participating site. The registry will embody a Europe-wide representative, patient inclusive overview of MEN1-related manifestations and the effect of MEN1 on patient’s life by using patient-related outcomes. Furthermore, it will serve as an umbrella for linked MEN1-related studies in the future.

Objective

The primary objectives of the European MEN1 registry are to collect retrospective and prospective demographical and clinical data and patient-reported outcomes of MEN1 patients, aiming:

1. to create more insight into the quality of life of MEN1 patients and the experience of the healthcare provided

2. to increase knowledge on the incidence, natural history (including risk factors for aggressive behaviour) and outcomes of different MEN1-related manifestations

3. to provide a starting point for future MEN1-related studies on specific manifestations, for example by case-identification of rare manifestations within MEN1.

Members of this Study Group

For more information regarding the study or if you are interested to contribute to this study, please contact registries@lumc.nl.