Rare disease registries are essential platforms for improving knowledge of rare conditions, supporting research, facilitating collaboration between healthcare professionals, and enabling clinical benchmarking. With the increasing number of rare disease registries, appropriate data governance, infrastructure, documentation, and access policies are required to ensure high-quality and sustainable use of collected clinical data.

To describe key principles for data access and governance policies in rare disease registries that collect clinical outcomes, using the European Registries for Rare Endocrine Conditions (EuRRECa) project as a model for good practice.

The EuRRECa project was used as an example to highlight important aspects of registry governance, including data access procedures, documentation, infrastructure, training, auditing, and implementation of the Findable, Accessible, Interoperable and Reusable (FAIR) data principles. The requirements for sustainable registry management and responsible use of clinical outcome data were reviewed.

The EuRRECa model demonstrated the importance of clear governance structures and standardised processes for managing rare disease registry data. Key elements include transparent data access policies, defined roles and responsibilities, quality assurance procedures, and mechanisms to support collaboration between healthcare professionals, researchers, and European Reference Networks. These principles facilitate the responsible reuse of clinical data for research and improvement of patient care.

The EuRRECa project provides a framework for developing robust data access and governance policies for rare disease registries. Applying these principles can improve registry quality, promote international collaboration, and maximise the value of clinical data collected across healthcare networks.

High-quality rare disease registries require clear governance, secure data access procedures, and harmonised standards. The EuRRECa project demonstrates how structured policies can support responsible data sharing, enable research, and contribute to improved understanding and management of rare endocrine conditions.