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
Read the October edition of the Endo-ERN newsletter now! We announce our LinkedIn page, talk about our role in the EU ERN coordinators working group, and our translated flyers! Continue reading
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
In October 2018, Christiaan F. Mooij pubished a dissertation on Cardiovascular Risk and Steroid Metabolism in Congenital Adrenal Hyperplasia (CAH). Continue reading
Read the September edition of the Endo-ERN newsletter now! This issue reports about our time at ESPE2018, gives an update on the Clinical Patient management system & the newly Operational Helpdesk, and the succesful audit of seven Endo-ERN centers. Continue reading
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
Seven Endo-ERN Reference centers were assessed during the audit last month and all seven passed! The audit consisted of seven documentation assessments and one on-site visit. Continue reading
Endo-ERN was present at the European Society of Paediatric Endocrinology Meeting 2018. For the whole duration of the meeting we had a stand together with EuRRECa and there was a special Endo-ERN symposium. Continue reading
Read the summer edition of the Endo-ERN newsletter now! The issue contains new information about Endo-ERN & EuRRECa at the ESPE2018 meeting, an update on the Clinical Patient Management System, and the first guidelines & consensus papers endorsed by Endo-ERN. Continue reading
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