Signposting health care providers and patients to high quality detailed condition registries is one of the central aims of EuRRECa and EuRR-Bone. We are achieving this aim by developing a list of affiliate registries:
|Network for continious and long-term monitoring of growth and weight development in children in Germany
|Global registry in the field of lipodystrophy. It aims to accumulate sufficient data for sound research in this area
|Global registry for novel therapies in rare bone & endocrine conditions
|International registries for rare conditions affecting Sex Development & Maturation
Frequently Asked Questions
An existing registry can consider to become an affiliated registry because of several different benefits:
- Our information sheets and consent forms can be used for the affiliate registry as well as our Core Registry
- Data entered in our Core Registry can be shared with the affiliate registry
- The affiliate registry will have greater visibility through the EuRRECa/EuRR-Bone channels of dissemination
- Greater likelihood of sustaining high quality detailed condition registries
- Opportunities to exchange experiences on the activities and sharing methodological tools for improving the registry quality
Registries seeking affiliate status should complete the Affiliate Registry Form. 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”.
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”.