How to become one and which affiliated registries are there?
EuRR-Bone and EuRRECa aim to be inclusive registries rather then competing. Therefore we signpost health care providers and patients to other high quality detailed disease registries on topics not covered by our projects.
Why should an existing registry consider to become affiliated registry?
- Our information sheets and consent forms can be used for the affiliate registry as well as the Core Registry
- Data entered in the Core Registry can be shared with the affiliate registry
- Greater visibility of the affiliate registry through EuRRECa’s/EuRR-Bones 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.webropol.com/s/affiliateregistries.
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).
CrescNet (Germany): a detailed national registry on Achondroplasia. Registry lead: Prof. Dr. Roland Pfäffle (Leipzig)
I-DSD (Global): connects clinical and research centres around the world allowing them to collect standardised information aimed at improving clinical practice, research and understanding of a wide range of conditions affecting sexual development and maturation. It has a network that reaches 260 centres in 63 countries on all the continents. Of these, 115 centres from 40 countries use the registries and have entered over 5,500 cases where information can be shared for a range of purposes that have the ultimate aim of improving the health of people with these rare conditions. Registry lead: Professor Faisal Ahmed (Glasgow)