Introduction: The European Registries for Rare Endocrine Conditions (EuRRECa) aim to support the needs of the endocrine and bone community by facilitating the collaboration between patients, health care professionals and researchers across Europe and beyond. It consists of two registries: an electronic reporting tool, e-REC and the core registry. Pituitary adenoma is the most reported condition in e-REC, with over 2400 cases reported so far. In the core registry, 71 patients  have been registered with a median age of 64 years (17-88).

Aim: To develop a pituitary tumour module within the EuRRECa core registry for the registering of cases of this condition. A secondary aim is to detect cases showing aggressive tumour behaviour.

Methods: A group of experts from Endo-ERN, ESE, ESPE, and ENEA in the field of hypothalamic and pituitary disorders as well as pituitary tumours met remotely on several occasions between December 2020 and March 2021 to develop a consensus on relevant data fields.

Results: A total of 40 variables were grouped in 10 domains that collect several aspects of the care of patients with pituitary tumours. These domains included clinical phenotype, visual impairment, secreted hormones, imaging, genetics, histopathology, medical therapy, radiotherapy and surgical outcomes. In addition, a questionnaire aimed at collecting the basic aspects of the disease and guiding the users to the more detailed areas of the module was included. The module has been incorporated into EuRRECa’s core registry platform and will be available to complete if the diagnosis of any form of pituitary tumour is selected.

Conclusion: Pituitary tumour is the most reported condition in e-REC. The development of a dedicated registry will provide the clinicians with the opportunity of sharing aspects of the disease and care of their patients with health care professionals and the research community. A working group consisting of experts across the patient age span from several centres across Europe proved to be a successful strategy in reaching consensus rapidly.