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].