Criteria required for reference centres for rare diseases

Appropriate capacity to diagnose, monitor and manage patients with evidence of good outcomes when applicable
Sufficient capacity to provide expert advice, diagnosis or confirmation of diagnosis, to produce and adhere to good practice guidelines and to implement outcome measures and quality control
Demonstration of a multidisciplinary approach
High level of expertise and experience documented through publications, grants or honorary positions, teaching and training activities
Strong contribution to research
Involvement in epidemiological surveillance, such as registries
Close links and collaboration with other expert centres at the national and international levels and a capacity to network
Close links and collaboration with patient associations where they exist
Perform education, information, communication activities to empower patients
Although an ENCR should fulfil most of the above criteria, the comparative relevance of these various criteria will be influenced (in part) by the particular disease or group of diseases covered

ENCR: European national centre of excellence. Reproduced from [130].