Affiliate Registries
Registries that hold multi-centre data and are seeking to bulk upload data to GloBE-Reg or SDMregistries are required to apply for Affiliate Registry status before the bulk upload can occur. This allows the Office for Rare Conditions Registries team to assess the quality of the registry from which the data shall be received. Affiliate Registries will undergo a re-assessment every 5 years.
To complete the Affiliate Registry application form, please visit the following link https://link.webropol.com/s/orcregistries-affiliate-form.
| Affiliate Registry | Description | Date of Approval |
| INSIGHTS-GHT |
Investigation of significant health trends in the treatment with growth hormone products Contact: david.pittrow@tu-dresden.de |
30/10/24 |
| BaMaRa |
BNDMR – Banque Nationale de Données Maladies Rares – Registry : BaMaRa (French National Rare Diseases Registry) Contact: contact.bndmr.nck@aphp.fr |
20/11/24 |
| EuRREB |
European Registries for Rare Endocrine and Bone Conditions Contact: registries@lumc.nl |
04/12/24 |
If you have any queries, please contact info@globe-reg.net or info@sdmregistries.org
Updated 22/11/24
Frequently Asked Questions
Why should an existing registry consider to become affiliated registry?
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 ORC Registries
- Data entered in our ORC Registries can be shared with the affiliate registry
- The affiliate registry will have greater visibility through the ORC Registries channels of dissemination
- Greater likelihood of sustaining high quality condition registries
- Opportunities to exchange experiences on the activities and sharing methodological tools for improving the registry quality
Are you seeking affiliate status?
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”.
Want to use bulk-upload?
The possibility of bulk-upload of Core and Longitudinal data can be discussed with the ORC Registries Team, please contact us at: info@globe-reg.net (GloBE-Reg) or info@sdmregistries.org (SDMregistries)
Who should I contact if I have any questions?
If you would like any additional information about our registries, please do not hesitate to contact us at: info@globe-reg.net (GloBE-Reg) or info@sdmregistries.org (SDMregistries)