Feasibility of transition research in pituitary disease using patient registries: a EuRREB secondary survey
This study provides initial characterization of transition of care in rare pituitary diseases in Endo-ERN RCs, showing high follow-up but inconsistent use of plans, patient-reported outcome measures (PROMs), and documentation. Rare disease registries can act as a tool to understand the process and identify barriers.
Authors
- Iris C. M. Pelsma (ORCID: https://orcid.org/0000-0003-4956-4037)
- Ana Luisa Priego Zurita (ORCID: https://orcid.org/0000-0003-4209-9996)
- Violeta Iotova (ORCID: https://orcid.org/0000-0003-4160-1200)
- Nienke Ruurdje Biermasz (ORCID: https://orcid.org/0000-0001-5817-3594)
- S. Faisal Ahmed (ORCID: https://orcid.org/0000-0003-0689-5549)
- Savi Shishkov (ORCID: https://orcid.org/0000-0002-6071-7703)
- on behalf of Endo-ERN pituitary Tra
Institutions
- Medical University of Varna (BG)
- University of Applied Sciences Leiden (NL)
- Leiden University Medical Center (NL)
- University Hospital St. Marina (BG)
- University of Glasgow (GB)
Publication Details
- Journal
- Endocrine Connections
- Published
- 2025-11-14
- DOI
- https://doi.org/10.1530/ec-25-0586
- Primary Topic
- Pituitary Gland Disorders and Treatments
- Type
- article
- Field-Weighted Citation Impact
- 0.00