An observational study in Ehlers-Danlos Syndromes (EDS), sponsored by Assistance Publique - Hôpitaux de Paris. Not yet recruiting. Open to participants aged 16 Years and older, including healthy volunteers. Per ClinicalTrials.gov, last updated 2026-10-27.
Sponsored by Assistance Publique - Hôpitaux de Paris · Observational
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.
One of the benefits of these collections will be to address research challenges associated with rare diseases. Due to the low prevalence of SEDs, we currently lack the resources to initiate research projects. Nevertheless, a clinical and biological database will enable us to consider setting up larger-scale research projects in collaboration with research units partnered with the CRMR SED-NV. To establish a health database using samples obtained during clinical care, as well as by retrieving and reusing samples already collected during care for patients who have been followed since 2017, and to build a prospective biological collection by collecting samples during the routine follow-up of patients being monitored for SED-NV at the CRMR SED-NV at Raymond Poincaré Hospital.
Similarly, as part of their care, patients being treated for SED-NV may undergo a skin biopsy for fibroblast culture as part of the diagnostic process. Any remaining fibroblasts will then be stored for research.
In the event of surgery performed on a patient with SED (orthopedic, gastrointestinal, or cardiac), a tissue specimen considered waste and intended for disposal may be retained for research purposes.
66 studies on the registry are indexed under Ehlers-Danlos Syndrome; 24 are open to participants now.
This study's planned enrollment of 3,500 is above the median of 153 across 32 observational studies indexed under Ehlers-Danlos Syndrome.
Browse Ehlers-Danlos Syndrome studies →Assistance Publique - Hôpitaux de Paris is the lead sponsor of 3,592 studies on the registry; 1,033 are open to participants now.
Counted across the registry records on this site, refreshed daily.
This is a retrospective and prospective cohort study. All patients diagnosed with SED-NV and followed up at the CRMR SED-NV unit at Raymond Poincaré Hospital may be included in this study.
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion criteria:
Specific criteria will be determined for each study conducted using the database.
The objective of this non-interventional study is to establish a database of patients with SED-NV who are receiving routine care. It aims to collect, both retrospectively and prospectively, biological and clinical data from patients treated at the SED-NV CRMR at Raymond Poincaré Hospital and to follow these patients over the long term in order to document the clinical course of the disease and the therapeutic strategies implemented. This will help address the challenges posed by research into a rare disease with a low incidence. One of the major challenges is to study the clinical and biological biomarkers involved in the mechanisms of SED-NV.
Time frame: from study star through study completion ( which is 20 years)
Specific criteria will be determined for each study conducted using the database
Clinical and biological data collected from patients with SED-NV will be described using appropriate descriptive statistics. Specific variables and analyses will depend on the research question addressed in each study conducted using the database.
Time frame: from study star through study completion ( which is 20 years)
No study locations are listed for this record.
Start is estimated for Nov 2026; primary completion for Nov 2046, 240 months later.
How these figures are worked out, and which studies are left out of them.
From the registry record's own update history. This site started tracking changes on Sep 25, 2026; for anything earlier, see the record history on ClinicalTrials.gov ↗
This study is not yet recruiting, as verified in Sep 2026. You cannot join it, but the record below documents what was studied.
Get an email when the registry record changes — status, dates, results — or when someone posts here.
Sign in to followQuestions and observations about this study, from anyone following it. Not medical advice, and not a channel to the study team — their contact details are on the registry record.
Sign in to join the discussion. Reading takes no account; posting does. You choose a display name, and a pseudonym is the default.
Nothing here yet. If you are running this trial, taking part in it, or weighing whether to, this is the place to say so.
Assistance Publique - Hôpitaux de Paris →