Multiple Endocrine Neoplasia type 1 (MEN-1)
The condition specific module was launched in December 2025 and is the work of the MEN-1 Working Group.
Want to start using the module? Get access to the Core Registry and read the instructions (download, 2 MB) on how to use the module.
After entering the patient in the Core Registry, the MEN-1 module appears automatically and is ready to use.
The full data dictionary can be downloaded here.
The module collects information on
- Clinical manifestation (at presentation and during the life-course)
- Genetic testing;
- Treatment
Specific focus on
- distant metastases from duodeno-pancreatic neuro-endocrine tumours (DPNETs)
- breast cancer
- very aggressive forms of MEN-1 manifestations (adrenocortical carcinoma, pituitary carcinoma, parathyroid carcinoma, other aggressive NETs)
Frequency of the data collection
The working group has decided on at least annual data collection, unless additional data entry (in case of important events) is needed. For this purpose a new outcome is created at every time point (the fields will be prefilled with the previously entered data).
Tools used in the module
- EQ-5D-5L
- In future – Cancer worry scale and HADS
Please check out our study study groups overview for current studies that include data from this module. If you are interested in working with data from this module, please fill out a Data Request Form.
If you have any questions or interest in joining the Working Group, please contact us at registries@lumc.nl