CLINICAL AND BIOLOGICAL DATABASE OF PATIENTS WITH NON-VASCULAR EHLERS-DANLOS SYNDROMES

The Rare Disease Reference Center (CRMR) for Non-Vascular Ehlers-Danlos Syndromes (NV-EDS) at the Raymond Poincaré University Hospital provides diagnosis and care for patients with non-vascular Ehlers-Danlos syndrome. Thanks to its expertise in clinical care and research, this CRMR has been accredited by the Ministry of Health since 2017 and has served as the coordinator of the national network for NV-Ehlers-Danlos syndromes since 2023. It is part of the OSCAR healthcare network for rare diseases of the bone, calcium, and cartilage and is a member of the Paris-Saclay Rare Diseases Platform. Due to the low prevalence of non-vascular Ehlers-Danlos syndromes (NV-EDS), prospective patient enrollment will not yield a sufficiently large number of samples for several years, making it difficult to study these conditions in detail. We therefore believe it is important to supplement this cohort retrospectively by including clinical data from patients followed since 2017, as well as biological data from clinical specimens that will be retrieved and reused for research purposes. The clinical data associated with the biological samples will help improve the diagnosis, management, and treatment of patients with SED-NV. The clinical and biological data collected will enable the conduct of future research projects in collaboration with research units and partner laboratories of the CRMR SED-NV at the Raymond Poincaré University Hospital.