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. This impacts the body's connective tissue and makes people with VEDS at high risk of spontaneous aortic and arterial rupture, pneumothorax, and hollow organ perforation across the ag
| Condition(s) | Vascular Ehlers-Danlos Syndrome |
|---|---|
| Status | Recruiting |
| Phase | NA |
| Study type | Interventional |
| Summary | Vascular Ehlers-Danlos Syndrome (VEDS) is caused by pathogenic variants of the COL3A1 gene, resulting abnormal Type III collagen protein. This impacts the body's connective tissue and makes people with VEDS at high risk of spontaneous aortic and arterial rupture, pneumothorax, and hollow organ perforation across the age spectrum. Given this risk and high potential for lethality, VEDS is considered the most severe type of Ehlers-Danlos Syndrome. In addition, many patients experience chronic pain and fatigue, sleep disturbances, and mental health challenges. As is the case for many patients with chronic illness, stress, anxiety, and depression are often present over the course of the disease. Despite the antecedent, stress and anxiety trigger a sympathetic nervous system (SNS) response in th |
| Who can participate | Inclusion Criteria: * Participants must be diagnosed with Vascular Ehlers-Danlos Syndrome verified by a mutation of the COL3A1 gene * Ages 12-45 year at the time of enrollment * Access to a smartphone as well as an additional device with camera and microphone * Stable internet access * English speaking Exclusion Criteria: * Non-English speakers * Any conditions or developmental delays limiting the ability to utilize technology or follow directions. |
| Ages | 12 Years to 45 Years |
| Sex | All |
| Lead sponsor | Baylor College of Medicine |
| Locations | Houston, Texas, United States |
| Start date | 2024-04-01 |
| NCT ID | NCT05994664 |
| Official listing | https://clinicaltrials.gov/study/NCT05994664 |