Clinical trials: Ehlers-Danlos Syndrome
Hypermobility Syndrome, Hypermobile Ehlers-Danlos Syndrome
Dynamic Stability Exercises in Patients With Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder
Background: Symptomatic hypermobility may lead to a number of restrictions in daily life. So far, there is a lack of effective treatments.
- Trial name
- NCT05800262
- Testing
- Dynamic stability exercises
- Where
- 2 sites in Sweden
- Volunteers
- 15 people
- Sponsor
- University Hospital, Linkoeping
Hypermobile Ehlers-Danlos Syndrome, Hypermobility Syndrome
Patient-based Care Versus Standard Care for Patients With hEDS/HSD and Multidirectional Shoulder Instability
For hEDS or HSD patients with MDI, a multidisciplinary treatment approach is suggested. As follows, physiotherapy plays a key role in this integrative management.
- Conditions
- Hypermobile Ehlers-Danlos Syndrome, Hypermobility Syndrome, Multidirectional Subluxation of Shoulder
- Trial name
- NCT04666896
- Testing
- Tailored home-based exercise therapy, Standard home-based exercise therapy
- Where
- Belgium
- Volunteers
- 21 people
- Sponsor
- University Ghent
Ehlers-Danlos Syndrome, Irritable Bowel Syndrome
RCT of Gut-directed Hypnotherapy in Ehlers-Danlos Syndromes and Generalized Hypermobility Spectrum Disorders
This randomized, controlled trial (RCT) will evaluate the effectiveness of gut-directed hypnotherapy for management of Irritable Bowel Syndrome (IBS) in individuals diagnosed with Ehlers-Danlos Syndromes or Generalized…
- Conditions
- Ehlers-Danlos Syndrome, Irritable Bowel Syndrome, Hypermobility Syndrome, Gastrointestinal Dysfunction
- Trial name
- NCT06325345
- Testing
- Gut-directed hypnotherapy, Standard Medical Therapy
- Where
- Canada
- Volunteers
- 74 people
- Sponsor
- University Health Network, Toronto
Ehlers-Danlos Syndromes (EDS)
Evaluation of the Role of Serum Tenascin-X Levels in the Diagnosis of Hypermobile Ehlers-Danlos Syndrome
Thirteen types of EDS have been described based on their clinical manifestations and genetic backgrounds. Their diagnosis relies on personal and family medical history, together with established clinical criteria.
- Trial name
- DIAGNOSEDh (NCT07899554)
- Testing
- Blood sampling
- Volunteers
- 80 people, healthy volunteers welcome
- Sponsor
- Assistance Publique - Hôpitaux de Paris
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
Hypermobile Ehlers-Danlos Syndrome, Hypermobile Spectrum Disorder
Hypermobile Ehlers-Danlos Syndrome - Transcutaneous Auricular Neuromodulation
Investigate whether at-home transcutaneous auricular VNS (tAN: transcutaneous auricular neurostimulation) improves a battery of nine key physical and psychological symptoms of a group of hEDS (Hypermobile Ehlers-Danlos Syndrome…
- Conditions
- Hypermobile Ehlers-Danlos Syndrome, Hypermobile Spectrum Disorder, Ehlers-Danlos Syndrome
- Trial name
- hEDS-tAN (NCT06105541)
- Testing
- Transcutaneous Auricular Neurostimulation
- Where
- United States
- Volunteers
- 25 people
- Sponsor
- Medical University of South Carolina
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
Ehlers-Danlos Syndrome, Hypermobile EDS (hEDS)
Integrative Medicine for Hypermobility Spectrum Disorder and Ehlers-Danlos Syndromes (IMforHSDandEDS)
A feasibility study of an integrative medicine program among patients with Hypermobility Spectrum Disorder (HSD) or Ehlers-Danlos syndromes (EDS)
- Conditions
- Ehlers-Danlos Syndrome, Hypermobile EDS (hEDS), Hypermobility Syndrome, EDS
- Trial name
- NCT04734041
- Testing
- Anti-inflammatory (Mediterranean-style) diet, Behavioral and psychosocial support
- Where
- 2 sites in United States
- Volunteers
- 20 people, healthy volunteers welcome
- Sponsor
- National University of Natural Medicine
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)
Ehlers-Danlos Syndrome Hypermobility Type
Wearing a Compression Garment for Patients With Hypermobility Type of Ehlers-Danlos Syndrome
The Ehlers-Danlos syndrome (EDS) is a rare genetic disease caused by an anomaly of the connective tissue. This syndrome has different forms. Hypermobility type is the most common.
- Trial name
- VETCOSED (NCT02144532)
- Testing
- short-sleeved vest CICATREX SED®)
- Where
- France
- Volunteers
- 48 people
- Sponsor
- Hospices Civils de Lyon
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
Ehlers-Danlos Syndrome Hypermobility Type (hEDS)
3D Printed Orthosis for Wrist Instability for Ehlers-Danlos Syndrome Patient
This study will determine if using 3D scanning and 3D printing technology to create an orthosis to improve the quality of life for people with Ehlers Danlos Syndrome (EDS) compared to existing prefabricated orthoses.
- Trial name
- NCT07565636
- Testing
- 3D scanned and 3D printed wrist hand orthosis
- Where
- United States
- Volunteers
- 2 people
- Sponsor
- ELewis
Connective Tissue Disease, Dissecting Aneurysm
Study of Heritable Connective Tissue Disorders
The purposes of this study are to identify the genes responsible for inherited connective tissue disorders and learn about the range of medical problems they cause.
- Conditions
- Connective Tissue Disease, Dissecting Aneurysm, Ehlers Danlos Syndrome, Marfan Syndrome
- Trial name
- NCT00001641
- Where
- United States
- Volunteers
- 900 people, healthy volunteers welcome
- Sponsor
- National Human Genome Research Institute (NHGRI)
Ehlers-Danlos Syndrome
Evaluation of a Cohort of Patients With Ehlers-Danlos Syndrome Treated With Orthopedic Surgery (SED-eval)
The aim of this study is to assess the joint involvement (shoulder - ankle - knee - elbow - wrist) in patients with Ehlers-Danlos Syndrome and treated by surgery.
- Trial name
- SED-eval (NCT05137379)
- Testing
- A joint functional score based on the affected joint
- Where
- 2 sites in France
- Volunteers
- 200 people
- Sponsor
- GCS Ramsay Santé pour l'Enseignement et la Recherche
Vascular Ehlers Danlos Syndrome
An Exercise and Lifestyle Programme for Adults With Vascular Ehlers-Danlos Syndrome: A Feasibility Study
Vascular Ehlers-Danlos syndrome (vEDS) is a rare, life-threatening connective tissue disorder. People with vEDS have often been advised to limit physical activity, yet the safety and feasibility of structured exercise in this…
- Trial name
- NCT07697573
- Testing
- Co-designed exercise-based lifestyle intervention
- Where
- United Kingdom
- Volunteers
- 40 people
- Sponsor
- Sheffield Hallam University
Marfan Syndrome, Loeys-Dietz Syndrome
Micro RNAs as a Marker of Aortic Aneurysm in Hereditary Aortopathy Syndromes
The primary objective of this study is to determine whether specific patterns of circulating micro-ribonucleic acids (miRNAs) are associated with aortic aneurysm and dissection in patients with hereditary aortopathy syndromes.
- Conditions
- Marfan Syndrome, Loeys-Dietz Syndrome, Thoracic Aortic Aneurysm and Dissection Syndromes, Ehlers-Danlos Type IV Syndrome
- Trial name
- NCT02213484
- Where
- 2 sites in United States
- Volunteers
- 20 people, healthy volunteers welcome
- Sponsor
- University of Colorado, Denver
Ehlers-Danlos Syndrome (EDS), Hypermobile EDS (hEDS)
STABLE Pilates for Hypermobility
This study is looking at whether Pilates-based exercise can help with hypermobility-related symptoms, like pain.
- Conditions
- Ehlers-Danlos Syndrome (EDS), Hypermobile EDS (hEDS), Hypermobile Spectrum Disorder
- Trial name
- STABLE (NCT07464093)
- Testing
- Pilates, Education
- Where
- United States
- Volunteers
- 100 people
- Sponsor
- Brigham and Women's Hospital
Chronic Pain, Marfan Syndrome
Single-Session "Empowered Relief" Class for Marfan Syndrome and Related Conditions
Empowered Relief (ER) is a 1-session pain relief skills intervention that is delivered in-person or online by certified clinicians to groups of patients with acute or chronic pain.
- Conditions
- Chronic Pain, Marfan Syndrome, Vascular Ehlers-Danlos Syndrome, Loeys-Dietz Syndrome
- Trial name
- NCT05980104
- Testing
- Empowered Relief
- Where
- United States
- Volunteers
- 92 people
- Sponsor
- Stanford University
Ehlers-Danlos Syndrome, Anesthesia, Local
Local Anesthetic Response in Ehlers-Danlos Syndrome (EDS) and Healthy Volunteers
Local anesthetic resistance is commonly reported by patients with EDS. However, there are no objective data on the occurrence of local anesthetic resistance in EDS patients and in healthy volunteers.
- Trial name
- NCT04036305
- Testing
- 0.9% Sodium Chloride Injection, Lidocaine Injection 2%, Bupivacaine Injection 0.5%
- Where
- United States
- Volunteers
- 230 people, healthy volunteers welcome
- Sponsor
- Vanderbilt University Medical Center
Vascular Ehlers-Danlos Syndrome, Vascular Ehlers Danlos Syndrome
Metabolic Phenotyping in vEDS
This research study will investigate whether participants with vascular Ehlers-Danlos syndrome (vEDS), a rare inherited condition, have problems with the way the participants' body stores and uses fat (adipose tissue).
- Conditions
- Vascular Ehlers-Danlos Syndrome, Vascular Ehlers Danlos Syndrome, Vascular EDS (vEDS)
- Trial name
- MPEDS (NCT07516496)
- Testing
- No intervention, observational
- Where
- United Kingdom
- Volunteers
- 15 people, healthy volunteers welcome
- Sponsor
- Cambridge University Hospitals NHS Foundation Trust