Clinical trials: Ehlers-Danlos Syndrome (EDS)
Ehlers-Danlos Syndrome, Vascular Type
SEDVasc (RaDiCo Cohort) (RaDiCo-SEDVasc)
The goal of this observational study is to describe the natural course of vascular Ehlers-Danlos syndrome, in particular the order of appearance of different types of complications (arterial, digestive, pulmonary and uterine).
- Trial name
- NCT05976841
- Where
- 17 sites in France
- Volunteers
- 340 people
- Sponsor
- Institut National de la Santé Et de la Recherche Médicale, France
Ehlers-Danlos Syndrome
Registry of Ehlers-Danlos Syndrome
RED is a retrospective and prospective registry, finalized for care and research purposes. It is articulated in main sections - strongly related and mutually dependent on each other - corresponding to different data domains…
- Trial name
- RED (NCT04133272)
- Where
- Italy
- Volunteers
- 3,000 people, healthy volunteers welcome
- Sponsor
- Luca Sangiorgi
Aortopathies, Thoracic Aortic Aneurysm
Pathogenetic Basis of Aortopathy and Aortic Valve Disease
The main purpose of this study is to define the complex genetic and pathogenic basis of thoracic aortic aneurysm (TAA) and other forms of aortopathy and/or aortic valve disease by identifying novel disease-causing genes and by…
- Conditions
- Aortopathies, Thoracic Aortic Aneurysm, Aortic Valve Disease, Thoracic Aortic Disease
- Trial name
- TAA (NCT03440697)
- Where
- 2 sites in United States
- Volunteers
- 3,000 people
- Sponsor
- Yale University
Alpha-Thalassemia, Beta-Thalassemia
FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases
FLOWER is a completely virtual, nationwide, real-world observational study to collect, annotate, standardize, and report clinical data for rare diseases.
- Conditions
- Alpha-Thalassemia, Beta-Thalassemia, Amyloidosis, Amyotrophic Lateral Sclerosis
- Trial name
- NCT06539169
- Where
- United States
- Volunteers
- 1,000 people
- Sponsor
- xCures
Ehlers-Danlos Syndrome, Pain
Mind-Body Therapy for Pain in Ehlers-Danlos Syndrome
This study will assess the effectiveness of mind-body therapy in relieving pain in patients with Ehlers-Danlos syndrome. This syndrome is a hereditary condition caused by a connective tissue defect and is often associated with…
- Trial name
- NCT00001966
- Testing
- Mind-body therapy
- Where
- United States
- Volunteers
- 40 people
- Sponsor
- National Human Genome Research Institute (NHGRI)
Marfan Syndrome, Turner Syndrome
National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions
The National Registry of Genetically Triggered Thoracic Aortic Aneurysms and Cardiovascular Conditions (GenTAC) was initiated in 2006 by the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute of…
- Conditions
- Marfan Syndrome, Turner Syndrome, Ehlers-Danlos Syndrome, Loeys-Dietz Syndrome
- Trial name
- GenTAC (NCT01322165)
- Where
- 7 sites in United States
- Volunteers
- 3,706 people
- Sponsor
- National Heart, Lung, and Blood Institute (NHLBI)
Joint Hypermobility Syndrome, Hypermobile Ehlers-Danlos Syndrome
Central Sensitization and Physical Activity in Adolescents With HSD/hEDS
Hypermobility Spectrum Disorder and hypermobile Ehlers-Danlos Syndrome (HSD/hEDS) is under-recognized and poorly understood and its management is therefore not clear.
- Trial name
- NCT05633225
- Testing
- Submax exercise test on a bicycle ergometer
- Where
- 2 sites in Sweden
- Volunteers
- 100 people, healthy volunteers welcome
- Sponsor
- Vastra Gotaland Region
Functional Gastrointestinal Disorders, Hypermobile Ehlers-Danlos Syndrome
Auricular Vagal Nerve Stimulation for Hypermobile Ehlers-Danlos Syndrome
Hypermobile Ehlers-Danlos Syndrome (hEDS) is a connective tissue disorder characterized by hyperextensible skin, joint hypermobility and additional connective tissue manifestations.
- Conditions
- Functional Gastrointestinal Disorders, Hypermobile Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome, Autonomic Nervous System Disease
- Trial name
- NCT05212129
- Testing
- Percutaneous vagal nerve stimulation (pVNS) device, Acoustic vagal nerve stimulation (aVNS) treatment
- Where
- United States
- Volunteers
- 90 people
- Sponsor
- Medical College of Wisconsin
Ehlers-Danlos Syndromes (EDS)
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.
- Trial name
- BASE SED-NV (NCT07899489)
- Volunteers
- 3,500 people, healthy volunteers welcome
- Sponsor
- Assistance Publique - Hôpitaux de Paris
Ehlers Danlos Syndrome
Hypermobile Ehlers Danlos Syndrome Healthcare Usage and Outcomes in England
To understand the access to services and outcomes for patients with hypermobile Ehlers Danlos Syndrome
- Trial name
- hEDS-Out (NCT07878793)
- Sponsor
- Walton Centre NHS Foundation Trust
Vascular Ehlers-Danlos Syndrome
Heart Coherence Training on Vascular Ehlers-Danlos Syndrome Patients
Vascular Ehlers-Danlos Syndrome (VEDS) is caused by pathogenic variants of the COL3A1 gene, resulting abnormal Type III collagen protein.
- Trial name
- NCT05994664
- Testing
- Heartmath Intervention, Control Group
- Where
- United States
- Volunteers
- 40 people
- Sponsor
- Baylor College of Medicine
Post-Acute COVID-19 Syndrome, ME/CFS
Unhide® Project: A Digital Health Platform to Collect Lifestyle Data for Brain Inflammation Research
The unhide® Project is a non-interventional, longitudinal research study designed to establish a secure data repository of demographic, health, and lifestyle information from individuals with brain inflammation and related…
- Conditions
- Post-Acute COVID-19 Syndrome, ME/CFS, Rheumatic Arthritis, Juvenile Rheumatoid Arthritis (JRA)
- Trial name
- NCT04806620
- Where
- United States
- Volunteers
- 10,000 people, healthy volunteers welcome
- Sponsor
- Brain Inflammation Collaborative
Ehlers-Danlos Syndrome, Obstructive Sleep Apnea
Obstructive Sleep Apnoea in Ehlers-Danlos Syndrome
Ehlers-Danlos Syndrome (EDS) is a clinically and genetically heterogeneous group of inherited connective tissue disorders characterized by joint hypermobility, skin hyperextensibility, and tissue fragility.
- Trial name
- OSA in EDS (NCT02435745)
- Where
- Switzerland
- Volunteers
- 200 people, healthy volunteers welcome
- Sponsor
- University of Zurich
EHLERS-DANLOS SYNDROME, TYPE IV, AUTOSOMAL DOMINANT, CHROMOSOME 2q31.2 DELETION SYNDROME
Celiprolol in Patients With Ehlers-Danlos Syndrome, Vascular Type
Ehlers-Danlos syndrome vascular type (EDS-IV) is caused by a genetic defect of collagen type III. Patient die (median 40 yrs) of vascular complications. There is no treatment.
- Trial name
- NCT00190411
- Testing
- celiprolol, Control
- Volunteers
- 54 people
- Sponsor
- Assistance Publique - Hôpitaux de Paris
Eds, Unspecified Type
Impact Study on Cerecare Compression Garments in the Treatment of Ehlers-Danlos Syndromes
EDS (Ehlers-Danlos syndromes) form a heterogeneous group of hereditary connective tissue pathologies, which present a characteristic triad: cutaneous hyperelasticity, articular hyperlaxity and connective tissue fragility.
- Trial name
- NCT03451188
- Testing
- Cerecare compression garments
- Where
- 5 sites in France
- Volunteers
- 76 people
- Sponsor
- Cerecare
Ehlers Danlos Hypermobile Syndrome
Prevalence of Mast Cell Activation Syndrome in Patients With EDS With Digestive Disorders
The aim of the study is to confirm the association between hypermobile Ehlers Danlos syndrome (hEDS) and mast cell activation syndrome (MCAS) in patients with digestive disorders managed in allergology departments.
- Trial name
- SAMED (NCT05382169)
- Testing
- Determine the presence of mast cell activation syndrome
- Where
- France
- Volunteers
- 30 people
- Sponsor
- Lille Catholic University
Small Fiber Neuropathy, Fabry Disease
Assessment of Small Fiber Neuropathy in Rare Diseases Using Sudoscan
Sudoscan™ (Impeto Medical, Paris France) uses electrochemical skin conductance as a novel noninvasive method to detect sudomotor dysfunction.
- Conditions
- Small Fiber Neuropathy, Fabry Disease, Ehlers Danlos Syndrome, Mitochondrial Disease
- Trial name
- NCT02985710
- Testing
- Sudoscan, Skin biopsy, QSART
- Where
- United States
- Volunteers
- 102 people, healthy volunteers welcome
- Sponsor
- Massachusetts General Hospital
Hypermobility Type Ehlers-Danlos Syndrome
Compression Garments on Hypermobility Type of Ehlers-Danlos Syndrome (CGhEDS)
This study evaluates the effects of wearing a compression garment on the postural balance of patients with hypermobility type of Ehlers-Danlos syndrome, in randomised controlled study.
- Trial name
- VECO (NCT03359135)
- Testing
- Rehabilitation, Compression Garment
- Where
- France
- Volunteers
- 40 people
- Sponsor
- Hôpital Raymond Poincaré
Cardiomyopathy, Hypertrophic, Cardiomyopathy, Dilated
National Network for Cardiovascular Genomics: Advancing Cardiovascular Healthcare for Hereditary Diseases in Brazil's Unified Health System Through a Multicenter Registry
The goal of this observational study is to develop a registry of Brazilian patients with hereditary cardiovascular diseases, combining clinical and genomic data.
- Conditions
- Cardiomyopathy, Hypertrophic, Cardiomyopathy, Dilated, Cardiomyopathy Restrictive, Arrhythmogenic Right Ventricular Dysplasia
- Trial name
- RENOMICA-Hcor (NCT06546137)
- Testing
- whole genome sequencing
- Where
- 27 sites in Brazil
- Volunteers
- 1,211 people
- Sponsor
- Hospital do Coracao
Ehlers-Danlos Syndrome, Multiple Sclerosis
Vascular Fundus Changes in Patients With High Probability of Chronic Cerebrospinal Venous Insufficiency (CCSVI)
The investigators propose that evidence of chronic cerebrospinal venous insufficiency (CCSVI) may be evident in the vasculature of the fundus.
- Trial name
- NCT01356134
- Where
- United States
- Volunteers
- 60 people, healthy volunteers welcome
- Sponsor
- Genetic Disease Investigators