The Pituitary tumour module within the Core Registry has been developed by the Pituitary Tumour Working Group and launched in December 2021. To date, it’s actively collecting data on this condition both in children and adults. This module includes questions aimed at identifying tumors expressing aggressive behaviour.

Want to start using the module? Get access to the Core Registry and read the instructions on how to enter a patient into the registry and manual on how to use the module.

After entering the patient with the diagnosis of any kind of pituitary adenoma or carcinoma, as well as Cushing disease, acromegaly, pituitary gigantism, X-linked acrogigantism in the Core Registry, the Pituitary tumor module appears automatically and is ready to use.

The full data dictionary can be downloaded here.

If you have questions or interest in joining the working group, please contact us on: registries@lumc.nl.

The module collects information on

• Family and clinical history, symptoms, anamnestic data and genetic testing;
• Endocrine manifestations;
• Visual impairment;
• Laboratory tests and imaging;
• Medical treatment and its efficacy;
• Surgery, histology, post-operative data, surgery complications.