Clinical trials: Ehlers-Danlos Syndrome
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
Rare Diseases, Fatigue
Fatigue, Depressive Disorders and Insomnia in Adult Patients with Marfan Syndrome and Ehlers-Danlos Syndrome: Survey
The goal of this observational study is to describe and assess the presence of perceived fatigue in subjects with MFS and EDS. the main question it aims to answer through the FSS instrument is: The relationship of fatigue with…
- Conditions
- Rare Diseases, Fatigue, Insomnia, Depression
- Trial name
- FAMED (NCT05712564)
- Testing
- Questionnaire
- Where
- Italy
- Volunteers
- 282 people
- Sponsor
- IRCCS Policlinico S. Donato
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, 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
- NCT05603741
- Testing
- 0.9% Sodium Chloride Injection, Lidocaine Injection 2%
- Where
- Canada
- Volunteers
- 155 people, healthy volunteers welcome
- Sponsor
- University of Calgary
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
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
Collagen Degeneration, Wrinkle
The Effects of Topical Almond Oil and Tretinoin on Facial Wrinkles
Investigate the topical use of almond oil, almond oil augmented with 0.5% vitamin E, 0.025% tretinoin oil augmented with castor oil on the appearance of facial fine lines and wrinkles, pigmentation, hydration, trans-epidermal…
- Conditions
- Collagen Degeneration, Wrinkle, Pigmentation, Elastic Skin
- Trial name
- NCT06571721
- Testing
- Topical Product: Almond Oil, Topical Product: Almond oil augmented with 0.5% Vitamin E, Topical Product: 0.025% Tretinoin oil augmented with castor oil
- Where
- United States
- Volunteers
- 90 people, healthy volunteers welcome
- Sponsor
- Integrative Skin Science and Research
Aortic Diseases, Aortic Dissection
Proximal Aortopathy in Scotland - Epidemiology and Surgical Outcomes
The aorta is the principal arterial vessel arising from the left heart that transfers blood to the body. Certain genetic and familial disease processes are known to weaken the aortic wall resulting in dilation and potential…
- Conditions
- Aortic Diseases, Aortic Dissection, Aortic Aneurysm, Thoracic, Aortic Ectasia
- Trial name
- NCT05389865
- Testing
- Surgery on the proximal aorta (aortic root +/- ascending aorta), Patients diagnosed with thoracic aortopathy but not operated upon
- Where
- United Kingdom
- Volunteers
- 1,662 people
- Sponsor
- Golden Jubilee National Hospital
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
Evaluation of the Effects of Cross Linking on the Biomechanical Characteristics of Skin Samples From Patients With Classic or Hypermobile Ehlers-Danlos Syndrome
The main aim of this study is to evaluate the effect of cross linking on the elasticity of skin samples from patients with non-vascular Ehlers-Danlos Syndrome (hEDS or cEDS).
- Trial name
- SEDSKIN (NCT06336473)
- Testing
- skin biopsy
- Where
- France
- Volunteers
- 28 people
- Sponsor
- GCS Ramsay Santé pour l'Enseignement et la Recherche
Collagen Degeneration, Wrinkle
The Effects of Almond on Facial Skin Collagen and Wrinkles
Investigate the effects of almond consumption on collagen production, elastin levels, wrinkles, and pigmentation among premenopausal women and postmenopausal women belonging to all Fitzpatrick skin types.
- Conditions
- Collagen Degeneration, Wrinkle, Pigmentation, Elastic Skin
- Trial name
- NCT06074276
- Testing
- Food: whole almonds, Food: non-nut snack
- Where
- United States
- Volunteers
- 60 people, healthy volunteers welcome
- Sponsor
- Integrative Skin Science and Research
Ehlers-Danlos Syndrome, Pain, Chronic
Light Exposure on Pain in Hypermobile Ehlers-Danlos Syndrome
Chronic pain is a major complaint among many individuals living with hypermobile Ehlers Danlos Syndrome (hEDS) and may have a severe impact on quality of life and activities of daily living.
- Trial name
- LEEDS (NCT05561270)
- Testing
- White LED light, Green LED light
- Where
- United States
- Volunteers
- 30 people
- Sponsor
- New York Institute of Technology
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
Vascular Ehlers-Danlos Syndrome
Investigate Efficacy, Safety, and Pharmacokinetics of Enzastaurin for the Prevention of Arterial Events in Patients With Vascular Ehlers-Danlos Syndrome.
The purpose of this study is to investigate the efficacy of enzastaurin compared to placebo in preventing arterial events (rupture, dissection, pseudoaneurysm, carotid-cavernous sinus fistula, or aneurysm, fatal or not) leading…
- Trial name
- PREVEnt (NCT05463679)
- Testing
- Enzastaurin
- Where
- United States
- Volunteers
- 260 people
- Sponsor
- Aytu BioPharma, Inc.
Ehlers-Danlos Syndrome, Vascular Type
Angiotensin II Receptor Blockade in Vascular Ehlers Danlos Syndrome (ARCADE)
This study aims to verify the hypothesis that patients with Vascular Ehlers Danlos syndrome (vEDS) should benefit of the blockade of angiotensin (Ang) II noxious effects on their vasculature affected by a defect in type III…
- Trial name
- ARCADE (NCT02597361)
- Testing
- Irbesartan
- Where
- 15 sites in France
- Volunteers
- 61 people
- Sponsor
- Assistance Publique - Hôpitaux de Paris
Dry Eye Disease, Dry Eye
Neurological Dry Eye Study Stimulating Both Lacrimal and Vagus Nerves
This is a study on neurological dry eye disease, focusing on a patented over-the-counter supplement supporting tear production neurologically, including the lacrimal and vagus nerves.
- Trial name
- NCT06271005
- Testing
- NeuroTears
- Volunteers
- 75 people
- Sponsor
- Genetic Disease Investigators
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
Wrinkle, Elastic Skin
Straberi Epistamp Needling Treatment For Skin Rejuvenation
This pilot study will expand knowledge and application needling using the Epistamp device for the improvement of a new vitalized epidermal layer with new vibrant active cells, supported by more robust collagen and elastin fine…
- Conditions
- Wrinkle, Elastic Skin, Collagen Degeneration
- Trial name
- ESAA (NCT04742803)
- Testing
- Straberi Epistamp Microneedling Treatment
- Where
- United States
- Volunteers
- 30 people, healthy volunteers welcome
- Sponsor
- Universal Skincare Institute
Stroke, Ischemic, Stroke Hemorrhagic
Exploring Accessible Beauty for Individuals With Upper Extremity Deficits
The purpose of this study is to investigate the accessibility of beauty products for individuals with upper extremity disabilities.
- Conditions
- Stroke, Ischemic, Stroke Hemorrhagic, Stroke (CVA) or TIA, Stroke, Acute
- Trial name
- NCT05945784
- Testing
- Use of Rare Beauty makeup products
- Where
- United States
- Volunteers
- 57 people, healthy volunteers welcome
- Sponsor
- Casa Colina Hospital and Centers for Healthcare
Ehlers-Danlos Syndrome
Vision-based Assessment of Joint Extensibility in Ehlers Danlos Syndrome
Ehlers Danlos Syndrome (EDS) is a heterogenous group of genetic disorders with 13 identified subtypes. Hypermobile EDS (hEDS), although the most common subtype of EDS, does not yet have an identified genetic mutation for…
- Trial name
- NCT05366114
- Testing
- No intervention, additional video data collection only
- Where
- Canada
- Volunteers
- 225 people
- Sponsor
- University Health Network, Toronto