Signposting health care providers and patients to high quality detailed disease registries is one of the central aims of the EuRRECa project. EuRRECa will achieve this aim by developing a list of affiliate registries.
The benefits of affiliate status include:
- The EuRRECa information sheets and consent forms can be used for the affiliate registry as well as the EuRRECa Core Registry
- Data entered in the EuRRECa Core Registry can be shared with the affiliate registry
- Greater visibility of the affiliate registry through EuRRECa’s channels of dissemination
- Greater likelihood of sustaining high quality detailed disease registries
- Opportunities to exchange experiences on the activities and sharing methodological tools for improving the registry quality
Registries seeking affiliate status
Registries seeking affiliate status should complete the following application form- https://link.webropolsurveys.com/S/DB0C5FFB515A15B0. Please note a separate form should be completed for each registry.
This form has been developed based on the criteria which have been highlighted in the article “Recommendation for Improving the Quality of Rare Disease Registries” (available from https://pubmed.ncbi.nlm.nih.gov/30081484/).
These quality criteria have acceptability amongst the rare disease community for the self-evaluation of rare disease registries, with high levels of consensus for the proposed quality criteria reported in the article “The Quality Evaluation of Rare Disease Registries—An Assessment of the Essential Features of a Disease Registry” (available from https://www.mdpi.com/1660-4601/18/22/11968).
For further information please contact- firstname.lastname@example.org