Affiliate Registries

Affiliate Registries

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:

Registry Description Contact
CrescNet Network for continious and long-term monitoring of growth and weight development in children in Germany info@crescnet.org
EClip-Registry Global registry in the field of lipodystrophy. It aims to accumulate sufficient data for sound research in this area help-eclip-registry@uniklinik-ulm.de
GloBE-Reg Global registry for novel therapies in rare bone & endocrine conditions info@globe-reg.net
I-DSD/I-CAH/I-TS International registries for rare conditions affecting Sex Development & Maturation sdmregistries.org/contact/

 

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”.

The possibility of bulk-upload of Core data elements can be discussed with the EuRRECa/EuRR-Bone Registries Team, please contact us at: registries@lumc.nl

If you would like any additional information about our registries, please do not hesitate to contact us at registries@lumc.nl