BASE SED-NV
Evaluation of the Role of Serum Tenascin-X Levels in the Diagnosis of Hypermobile Ehlers-Danlos Syndrome
Sponsor study identifier
Secondary identifiers
REGISTRY · IDRCB
observational
3,500
0 countries
N/A
Study Start
November 2026
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Primary Completion
November 2046
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
November 2046
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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.
Registry-reported information. Elapsed time and enrollment totals alone do not measure study progress or recruitment pace.
November 2046
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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Dates and qualifiers reported by the registry. Estimated dates do not confirm that a milestone has occurred.
September 30, 2026
Actual (reported)October 27, 2026
Actual (reported)November 2026
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
November 2046
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
November 2046
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
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.
from study star through study completion ( which is 20 years)
Specific criteria will be determined for each study conducted using the database
from study star through study completion ( which is 20 years)
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.
The prospective biological collection, derived from patients with SED-NV at the CRMR SED-NV at Raymond Poincaré Hospital, will consist of the following biological samples collected as part of routine care: * Whole blood, serum, plasma * DNA residues extracted for the analysis of constitutional genetic characteristics and RNA residues extracted * Urine * Skin fibroblast residues * Tissue fragment residues Same biopsecimen will be reuse for biological samples that already exist (retropective)
Karelle Benistan, MD
Assistance Publique - Hôpitaux de Paris
First Submitted
September 30, 2026
First Posted
October 27, 2026
Study Start
November 2026
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Primary Completion
November 2046
EstimatedContact the study team to confirm eligibility.
Planned date reported by the registry; this milestone is not confirmed as achieved.
Study Completion
November 2046
EstimatedPlanned date reported by the registry; this milestone is not confirmed as achieved.
Last Updated
October 27, 2026
Record last verified: 2026-09
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Source: ClinicalTrials.gov.
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