The current landscape of European registries for rare endocrine conditions

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On behalf of Endo-ERN the publication on ‘The current landscape of European registries for rare endocrine conditions’ was recently posted in the European Journal of Endocrinology. The objective was to identify international registries led from Europe for rare endocrine conditions and to understand the extent of engagement with these registries within Endo-ERN.

Ali SR. et al., on behalf of Endo-ERN, performed a search of Orphanet and RD-Connect and a survey of the reference centres within Endo-ERN.

In summary, registries exist for about three-quarter of conditions within Endo-ERN. Endo-ERN reference centres were aware of 41% of registries identified within Orphanet and RD-Connect and on the other hand, these two ‘registries of registries’ did not have a record of 48% of registries identified by the reference centres. There was greatest awareness and participation in international registries for conditions within the Adrenal, Glucose & Insulin and Sex Development themes. For the remaining conditions, awareness and participation in registries was less than 50%.
Although there is a need to develop new registries for rare endocrine conditions, there is a greater need to raise the profile and engagement with existing registries.

Read the full publication here

Read more about European Registries for Rare Endocrine Conditions here.