Rare endocrine conditions are a heterogeneous group of disorders that often require specialised multidisciplinary care and long-term follow-up. Due to their rarity, collecting sufficient clinical data to improve understanding of disease characteristics, outcomes, and management remains challenging. International collaboration and standardised data collection platforms are essential to address these unmet needs.

To describe the development and implementation of the European Registries for Rare Endocrine Conditions (EuRRECa) model, a platform designed to support international networks through standardised data collection for rare endocrine conditions.

The EuRRECa model was developed to support the European Reference Network on Rare Endocrine Conditions (Endo-ERN) by providing platforms for electronic reporting and registry-based data collection. The model includes an electronic reporting system (e-REC) for capturing new clinical encounters of rare endocrine conditions and a registry platform for collecting more detailed clinical information through condition-specific modules.

The EuRRECa platform established a framework for systematic and standardised collection of data across European expert centres. The electronic reporting system enabled surveillance of rare endocrine conditions, while the registry infrastructure allowed the development of disease-specific datasets to support research, benchmarking, and future clinical studies. The platform demonstrated the feasibility of international collaboration between centres involved in the care of patients with rare endocrine conditions.

The EuRRECa model provides a sustainable approach for collecting standardised data on rare endocrine conditions across Europe. By combining electronic surveillance with detailed registry modules, it supports collaboration between expert centres and facilitates research aimed at improving diagnosis, treatment, and outcomes for patients with rare endocrine disorders.

The EuRRECa model demonstrates how international registry platforms can overcome challenges associated with rare disease research. Through harmonised data collection and collaboration within European networks, it creates opportunities for improved understanding of rare endocrine conditions, clinical benchmarking, and the development of future research initiatives.