The current landscape of European registries for rare endocrine conditions

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. Continue reading

Quality of Care Standard for Adrenal Disorders

Over the past three years a quality of care standard for adrenal disorders has been developed and was recently listed in the Register of the Dutch National Health Care Institute in September 2018. The standard was initiated by the consortium AdrenalNet and was developed in cooperation with both patients and healthcare professionals. Continue reading

This entry was posted in ERN, MTG1.

6th International Summer School on Rare Disease and Orphan Drug Registries

The 6th International Summer School on Rare Disease and Orphan Drug Registries took place from September 10 to September 14, 2018, in Rome, Italy. The course was addressed to professionals and patients involved in, or planning, the establishment of a rare disease registry, particularly within the European Reference Networks (ERNs). Continue reading

RD-Connect: an international platform for rare disease data analysis and data sharing

All ERN members are invited to join RD-Connect!

RD-Conntect is an EU-funded integrated platform connecting databases, registries, biobanks and clinical bioinformatics for rare disease research. It provides user-friendly tools for data analysis and links different data types – omics (e.g. genomics), clinical information, patient registries and biobanks – into a common resource. Continue reading