Clinical trials: Ehlers-Danlos Syndrome, open to volunteers
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
Hypermobile EDS (hEDS), Hypermobile Ehlers-Danlos Syndrome
Hamstring Strengthening in Hypermobile Conditions
The goal of this clinical trial is to determine how strengthening the hamstring muscles affects the knee joint in people living with hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS).
- Conditions
- Hypermobile EDS (hEDS), Hypermobile Ehlers-Danlos Syndrome, Hypermobile Spectrum Disorder, Hypermobility Type Ehlers-Danlos Syndrome
- Trial name
- NCT07626957
- Testing
- Progressive resistance exercise with an emphasis on eccentric hamstring loading.
- Where
- Canada
- Volunteers
- 20 people
- Sponsor
- University of Calgary
Marfan Syndrome, Ehlers-Danlos Syndrome (EDS)
Multicentre Longitudinal Study of Bone Mineralisation Characteristics in Marfan Syndrome and Ehlers-Danlos Syndrome
The general objective of this research is to evaluate the characteristics of bone mineralisation in patients with Marfan syndrome or Ehlers-Danlos syndrome on a large case series.
- Conditions
- Marfan Syndrome, Ehlers-Danlos Syndrome (EDS), Mineral Density
- Trial name
- BONE (NCT07169669)
- Volunteers
- 150 people
- Sponsor
- IRCCS Policlinico S. Donato
Subjective Cognitive Complaints, Ehlers-Danlos Syndrome
COG+OT Telerehabilitation for Adults With Subjective Cognitive Complaints
This pilot study will evaluate a comprehensive cognitive assessment approach and personalized neurocognitive telerehabilitation intervention for adults with subjective cognitive complaints (SCC).
- Conditions
- Subjective Cognitive Complaints, Ehlers-Danlos Syndrome, Cognitive Dysfunction
- Trial name
- CogSCC (NCT07743229)
- Testing
- COG+OT Telerehabilitation
- Where
- 2 sites in United States
- Volunteers
- 16 people
- Sponsor
- Medical University of South Carolina
Pregnancy Complication, Aortic Dissection
PregnAncy-Related Aortic DISsEction in China
A multicenter observational study on pregnancy-related aortic dissection
- Conditions
- Pregnancy Complication, Aortic Dissection, Marfan Syndrome, Loeys-Dietz Syndrome
- Trial name
- PARADISE (NCT07672210)
- Testing
- Intervention strategies including medication or surgery
- Where
- 4 sites in China
- Volunteers
- 500 people
- Sponsor
- DeltaHealth Hospital · Shanghai
Hypermobile Ehlers-Danlos Syndrome
TMD-specific Physiotherapy in hEDS Patients Individuals With Hypermobile Ehlers-Danlos Syndrome
The aim of this study is to analyze the effects of strictly defined physiotherapy in patients temporomandibular dysfunction (TMD) and hypermobile Ehlers-Danlos Syndrome (hEDS).
- Trial name
- NCT05757960
- Testing
- Physiotherapy
- Where
- Germany
- Volunteers
- 25 people
- Sponsor
- University Hospital Muenster
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
Ehlers-Danlos Syndrome (EDS)
Impact of Ehlers-Danlos Syndrome on Gynaecological Health
Dysmenorrhea is a common problem in gynaecology, significantly impacting patients' quality of life. Ehlers-Danlos syndrome (EDS) is associated with joint hypermobility, tissue fragility and chronic pain.
- Trial name
- GYNESED (NCT07151274)
- Where
- France
- Volunteers
- 156 people, healthy volunteers welcome
- Sponsor
- University Hospital, Rouen
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
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
Ehlers-Danlos Syndrome Hypermobility Type (hEDS), Ehlers-Danlos Syndrome (EDS)
Regenerative Medicine for Joint Hypermobility and Instability
This clinical trial is designed to evaluate whether a stepwise injection-based treatment approach can reduce pain and improve function in adults with joint hypermobility, connective tissue laxity, and joint instability.
- Conditions
- Ehlers-Danlos Syndrome Hypermobility Type (hEDS), Ehlers-Danlos Syndrome (EDS), Joint Hypermobility, Joint Instability
- Trial name
- NCT07688096
- Testing
- Dextrose 20% Prolotherapy, Autologous Platelet-Rich Plasma, Doxycycline Hyclate Injectable (Investigational)
- Volunteers
- 100 people
- Sponsor
- Manhattan Pain Medicine, PLLC
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
Hypermobility Syndrome, Danlos Disease, Ehlers
Functional Instability in Patients Suffering From Collagen Disease and Joint Hypermobility
A joint is considered "hypermobile" when it has a greater range of motion than normal for a given age, ethnicity or gender. Many people have asymptomatic hyperlaxity in multiple joints, a condition called Generalized Joint…
- Conditions
- Hypermobility Syndrome, Danlos Disease, Ehlers, Collagen Diseases, Joint Hypermobility
- Trial name
- VIPIA (NCT05871216)
- Testing
- Clinical tests and balance evaluation using the Delos Proprioceptive System
- Where
- Italy
- Volunteers
- 30 people
- Sponsor
- Istituto Ortopedico Rizzoli
Complex Aortic Aneurysms, Thoracoabdominal Aneurysms
Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices
The purpose of this study is to evaluate the safety and efficacy of custom made devices, Zenith t-Branch devices and physician modification of FDA approved off-the-shelf endovascular grafts in the treatment of patients with…
- Conditions
- Complex Aortic Aneurysms, Thoracoabdominal Aneurysms, Pararenal Aneurysms, Juxtarenal Aneurysms
- Trial name
- CARPE-CMD (NCT02050113)
- Testing
- Custom Made Fenestrated or Branched Stent Graft
- Where
- United States
- Volunteers
- 600 people
- Sponsor
- Andres Schanzer
Vascular Ehlers-Danlos Syndrome, Vascular Ehlers Danlos Syndrome
Metabolic Phenotyping in vEDS
This research study will investigate whether people with vascular Ehlers-Danlos syndrome (vEDS), a rare inherited condition, have problems with the way their 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
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
Vascular Ehlers-Danlos Syndrome
Clinical Trial to Compare the Efficacy of Celiprolol to Placebo in Patients With Vascular Ehlers-Danlos Syndrome
This is a prospective, Phase 3, randomized, double-blind, placebo-controlled efficacy study to evaluate celiprolol in patients genetically confirmed as COL3A1-positive vEDS using a decentralized clinical trial design.
- Trial name
- DiSCOVER (NCT05432466)
- Testing
- ACER-002 (celiprolol) 200 mg BID
- Where
- United States
- Volunteers
- 150 people
- Sponsor
- Acer Therapeutics Inc.
Ehlers-Danlos Syndrome, Hypermobile, Chronic Pain
Photobiomodulation for Chronic Pain and Fatigue in Hypermobile Ehlers-Danlos Syndrome (PBM-SEDh-01)
This study evaluates the effect of photobiomodulation (PBM) therapy using a MLS® class IV laser on chronic pain and fatigue in patients with hypermobile Ehlers-Danlos Syndrome (hEDS).
- Conditions
- Ehlers-Danlos Syndrome, Hypermobile, Chronic Pain, Fatigue Syndrome, Chronic
- Trial name
- PBM-SEDh-01 (NCT07637084)
- Where
- France
- Volunteers
- 25 people
- Sponsor
- Centre Medical ISM (Integrative Systemic Medicine)
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
Autonomic Neuropathy, Ehlers-Danlos Syndrome Hypermobility Type
Autonomic Small Fiber Neuropathy and Ehlers Danlos Syndromes - Prospective Study and Registry
We examine patients with different autonomic neuropathies and Ehlers Danlos syndromes compared to healthy controls at three different points over time (baseline, after 3 months and after 1.5 years) to gain knowledge about the…
- Conditions
- Autonomic Neuropathy, Ehlers-Danlos Syndrome Hypermobility Type, Small Fiber Neuropathy, Postural Tachycardia Syndrome
- Trial name
- ProANS (NCT04310644)
- Testing
- No intervention planned, but all patients get our standart treatment
- Where
- Germany
- Volunteers
- 200 people
- Sponsor
- RWTH Aachen University