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 | Contact | Date of Approval |
|---|---|---|---|
| INSIGHTS-GHT | Investigation of significant health trends in the treatment with growth hormone products | 30/10/2024 | |
| BaMaRa | BNDMR – Banque Nationale de Données Maladies Rares – Registry : BaMaRa (French National Rare Diseases Registry) | contact.bndmr.nck @aphp.fr | 20/11/2024 |
| EuRREB | European Registries for Rare Endocrine and Bone Conditions | registries@lumc.nl | pending |
If you have any queries, please contact info@globe-reg.net or info@sdmregistries.org
Updated 20/11/24