Clinical trials: EDS
Ehler's Danlos Syndrome, Obstructive Sleep Apnea
Obstructive Sleep Apnoea in Children and Adolescents With 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
- NCT02712060
- Testing
- No intervention
- Where
- Switzerland
- Volunteers
- 50 people, healthy volunteers welcome
- Sponsor
- University of Zurich
COVID-19, Inflammatory Response
Severe COVID-19 Infection in Children Presenting to EDs in Israel and England
Even though the COVID-19 pandemic is no longer at its peak, the threat still lingers. Engaging in prospective surveillance studies will enable us to monitor the disease and prepare for any potential resurgence.
- Trial name
- SPICE (NCT06434701)
- Testing
- Nasopharyngeal swab sampling for COVID-19
- Where
- 6 sites in Israel
- Volunteers
- 500 people
- Sponsor
- Hadassah Medical Organization
Myocarditis, Cardiomyopathies
JOint Use of Database to Identify Risk Factors of CARDio-vascular Toxicity Induced by Immune Checkpoint Inhibitors
Immune checkpoint inhibitors (ICIs) might induce high grade immune-related adverse events (irAEs) involving the cardio-vascular system.
- Conditions
- Myocarditis, Cardiomyopathies, Heart Diseases, Cardiovascular Diseases
- Trial name
- JOCARDITE (NCT04294771)
- Testing
- ICI
- Where
- France
- Volunteers
- 500,000 people
- Sponsor
- Groupe Hospitalier Pitie-Salpetriere
Ehlers-Danlos Syndrome, Stickler Syndrome
Studies of Heritable Disorders of Connective Tissue
Background: Heritable disorders of connective tissue are genetic conditions that can affect the skin and other parts of the body. They are related to mutations in genes that are responsible for building tissues.
- Conditions
- Ehlers-Danlos Syndrome, Stickler Syndrome, Marfan Syndrome
- Trial name
- NCT00270686
- Where
- United States
- Volunteers
- 929 people, healthy volunteers welcome
- Sponsor
- National Institute on Aging (NIA)
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
Ehlers Danlos Syndrome, External Hydrocephalus
Head Circumference Growth in Children With Ehlers-Danlos Syndrome Who Develop Dysautonomia Later in Life
It is known that 33-50% of Classic and Hypermobile Ehlers-Danlos Syndrome patients eventually develop dysautonomia, otherwise known as "POTS" (Postural Orthostatic Tachycardia Syndrome).
- Conditions
- Ehlers Danlos Syndrome, External Hydrocephalus, Dysautonomia, Postural Orthostatic Tachycardia Syndrome
- Trial name
- NCT01367977
- Where
- United States
- Volunteers
- 21 people
- Sponsor
- Genetic Disease Investigators
Dehydration, Gastroenteritis
Ondansetron Administration to WELL Children With Gastroenteritis Associated Vomiting in EDs in Pakistan
The primary objective is to determine if the administration of a single dose of oral ondansetron (an anti-vomiting medication), compared to placebo, results in a reduction in intravenous (IV) rehydration therapy in children…
- Conditions
- Dehydration, Gastroenteritis, Vomiting, Diarrhea
- Trial name
- OWEP (NCT01870635)
- Testing
- Ondansetron
- Where
- 2 sites in Pakistan
- Volunteers
- 625 people
- Sponsor
- Dr. Stephen Freedman
Ehlers-Danlos Syndrome
Effects of a Multidisciplinary Outpatient Rehabilitation Program in Patients With Ehlers-Danlos Syndrome.
The management of patients with Ehlers-Danlos syndrome (EDS) is still underdeveloped in healthcare institutions in France. Although multidisciplinary management through exercise rehabilitation has demonstrated its benefits in…
- Trial name
- NCT04680793
- Testing
- Rehabilitation
- Where
- France
- Volunteers
- 25 people
- Sponsor
- Hakimi Adrien
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
Postural Tachycardia Syndrome, Ehlers-Danlos Syndrome
Standing Cognition and Co-morbidities of POTS Evaluation
The purpose of this study is to evaluate cognition in patients with postural tachycardia syndrome (POTS) while lying down and standing and to assess the prevalence of hypermobile Ehlers-Danlos Syndrome in POTS.
- Trial name
- SCOPE (NCT03602482)
- Testing
- Standing, Supine
- Where
- United States
- Volunteers
- 139 people, healthy volunteers welcome
- Sponsor
- Milton S. Hershey Medical Center
Genetics Syndrome, Ehlers-Danlos Syndrome
Genetics of Ehlers-Danlos Syndrome
We are planning to collected blood and saliva for DNA extraction to use for genetic testing of children and adults with EDS and their relatives. Medical records from other institutions and clinical notes for visits in Dr.
- Trial name
- NCT03093493
- Testing
- Genotyping
- Where
- United States
- Volunteers
- 334 people, healthy volunteers welcome
- Sponsor
- Boston University
Dehydration, Gastroenteritis
Ondansetron Administration to Children With Gastroenteritis, Vomiting and SOME Dehydration in EDs in Pakistan
The primary objective is to determine if the administration of a single dose of oral ondansetron (an anti-vomiting medication), compared to placebo, results in a reduction in intravenous (IV) rehydration therapy in children…
- Conditions
- Dehydration, Gastroenteritis, Vomiting, Diarrhea
- Trial name
- OSEP (NCT01870648)
- Testing
- Ondansetron
- Where
- 2 sites in Pakistan
- Volunteers
- 918 people
- Sponsor
- Dr. Stephen Freedman
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)
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
Hypermobile Ehlers-Danlos Syndrome, Heavy Menstrual Bleeding
Identifying the Determinants of Bleeding and Hypermobility in Patients With Heavy Menstrual Bleeding
In this study, researchers want to learn about the connection between heavy bleeding issues and joint hypermobility (loose joints).
- Conditions
- Hypermobile Ehlers-Danlos Syndrome, Heavy Menstrual Bleeding, Hypermobility Syndrome (Disorder)
- Trial name
- NCT05685199
- Where
- United States
- Volunteers
- 15 people
- Sponsor
- St. Jude Children's Research Hospital
Ehlers-Danlos Syndrome (EDS), Complex Regional Pain Syndrome (CRPS)
Two Point Discrimination
SPECIFIC AIMS Pain in both youth and adults is a complex, subjective and personal experience, and remains poorly understood. One particularly perplexing dimension of some forms of pain is the tendency of pain to spread outside of…
- Conditions
- Ehlers-Danlos Syndrome (EDS), Complex Regional Pain Syndrome (CRPS), Amplified Musculoskeletal Pain Syndrome (AMPS), Low Back Pain
- Trial name
- TPD (NCT03686748)
- Testing
- Two-point discrimination training, One-point discrimination training
- Where
- United States
- Volunteers
- 60 people, healthy volunteers welcome
- Sponsor
- Children's Hospital Medical Center, Cincinnati
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
Epilepsy-Dyskinesia, Epilepsy
Registry and Natural History of Epilepsy-Dyskinesia Syndromes
The Registry and Natural History of Epilepsy-Dyskinesia Syndromes is focused on gathering longitudinal clinical data as well as biological samples (blood, urine, and/or skin/tissue) from male and female patients, of all ages, who…
- Conditions
- Epilepsy-Dyskinesia, Epilepsy, Dyskinesia, EDS
- Trial name
- NCT06967727
- Where
- United States
- Volunteers
- 700 people
- Sponsor
- Boston Children's Hospital
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
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