Publication
Feasibility of transition research in pituitary disease using patient registries: a EuRREB secondary survey

Background

Transition from paediatric to adult care is a critical period for patients with rare endocrine diseases, including pituitary disorders. Limited data are available on the transition process, clinical characteristics, and outcomes of young people with pituitary disease. Patient registries may provide an opportunity to study transition pathways and improve long-term care.

Objective

To assess the feasibility of using the European Registry for Rare Endocrine & Bone Conditions (EuRREB) for transition research in pituitary disease and to describe the clinical characteristics of transition-age patients managed at reference centres within the European Reference Network on Rare Endocrine Conditions (Endo-ERN).

Methods

Patients aged between 14 and 24 years with a pituitary diagnosis recorded in the EuRREB Core Registry were included. Data from participating Endo-ERN reference centres were analysed to evaluate patient characteristics, diagnosis, treatment, follow-up, and transition-related aspects of care.

Results

The study demonstrated the feasibility of using EuRREB registry data to investigate transition in patients with pituitary disorders. The registry captured relevant clinical information from transition-age patients across participating European reference centres, including demographic characteristics, underlying diagnoses, treatments, and follow-up information. The collected data provide a foundation for future studies evaluating transition pathways and outcomes in rare pituitary conditions.

Conclusion

EuRREB provides a valuable platform for studying transition of care in patients with rare pituitary diseases. Continued registry development and prospective data collection will support a better understanding of transition needs and may contribute to improving continuity and quality of care for young people moving from paediatric to adult endocrine services.

Significance statement

This study shows that registry-based research can support the evaluation of transition care in rare endocrine conditions. The EuRREB Core Registry enables systematic collection of clinical data from young patients with pituitary disorders across Europe and creates opportunities to identify gaps in care and develop strategies to improve transition outcomes.

Overview publication

Title Feasibility of transition research in pituitary disease using patient registries: a EuRREB secondary survey
Date December 1st, 2025
Issue name Endocrine Connections
Issue number Volume 14, Issue 12
DOI 10.1530/ec-25-0586
Authors Shishkov S, Iotova V, Pelsma I, Priego Zurita AL, Biermasz N; Endo-ERN Pituitary Transition of Care Study Group & Ahmed SF
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