[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"vascular-ehlers-danlos-syndrome\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:vascular-ehlers-danlos-syndrome":26},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,4,0,[8,48,80,106],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":4,"enrollmentInfo":18,"targetDuration":4,"studyType":21,"phases":22,"briefSummary":24,"conditions":25,"keywords":27,"overallStatus":35,"whyStopped":4,"lastUpdateSubmitDate":36,"lastUpdatePostDateStruct":37,"startDateStruct":40,"completionDateStruct":42,"leadSponsor":44,"locationsCount":47},"100053337","an-exercise-and-lifestyle-programme-for-adults-with-vascular-ehlers-danlos-syndrome-a-feasibility-study-100053337",false,"NCT07697573","An Exercise and Lifestyle Programme for Adults With Vascular Ehlers-Danlos Syndrome: A Feasibility Study","Co-Producing and Piloting an Exercise-Based Lifestyle Intervention for Individuals With Vascular Ehlers-Danlos Syndrome (vEDS): A Mixed-Methods Feasibility Study","Inclusion Criteria:\n\n* Adults aged 18 years or older\n* Confirmed diagnosis of vascular Ehlers-Danlos syndrome (vEDS)\n* Living in the UK\n* Able to provide informed consent\n* Medically stable, defined as: no arterial dissection, rupture, or other major vEDS-related vascular event within the preceding 6 months; no recent hospitalisation for vEDS complications; and blood pressure considered controlled by their treating clinician\n* Medical clearance from their treating clinician\n* Not pregnant at the time of enrolment\n\nExclusion Criteria:\n\n* Major vEDS-related vascular event (arterial dissection or rupture) within the previous 6 months\n* Recent hospitalisation for vEDS complications\n* Blood pressure not controlled by treating clinician\n* Pregnancy at enrolment (participants who become pregnant during the intervention are withdrawn from the exercise component but may continue follow-up data collection if they wish)\n* Unable to provide informed consent","ALL","18 Years",{"count":19,"type":20},40,"ESTIMATED","INTERVENTIONAL",[23],"NA","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 group is poorly understood. This study works with people with vEDS, their families and clinicians to co-design a safe, tailored physical activity programme, then tests it in a 12-week randomised feasibility study comparing the programme with usual care. The aim is to find out whether the intervention and the trial procedures are safe, acceptable and practical, in order to inform a future full-scale trial. Outcomes focus on recruitment, retention, adherence, acceptability and safety, alongside exploratory measures of physical function, quality of life and microvascular health.",[26],"Vascular Ehlers Danlos Syndrome",[28,29,30,31,32,33,34],"vEDS","COL3A1","physical activity","exercise","feasibility study","rare disease","connective tissue disorder","NOT_YET_RECRUITING","2026-07-09",{"date":38,"type":39},"2026-07-13","ACTUAL",{"date":41,"type":20},"2027-03-01",{"date":43,"type":20},"2028-03-17",{"name":45,"class":46},"Sheffield Hallam University","OTHER",1,{"id":49,"slug":50,"hasResults":11,"nctId":51,"briefTitle":52,"officialTitle":53,"acronym":54,"eligibilityCriteria":55,"healthyVolunteers":56,"sex":16,"minAge":17,"maxAge":57,"enrollmentInfo":58,"targetDuration":60,"studyType":61,"phases":4,"briefSummary":62,"conditions":63,"keywords":66,"overallStatus":70,"whyStopped":4,"lastUpdateSubmitDate":71,"lastUpdatePostDateStruct":72,"startDateStruct":74,"completionDateStruct":76,"leadSponsor":78,"locationsCount":47},"100632654","metabolic-phenotyping-in-veds-100632654","NCT07516496","Metabolic Phenotyping in vEDS","Metabolic Phenotyping in Individuals With Vascular Ehlers-Danlos Syndrome (vEDS)","MPEDS","Inclusion Criteria:\n\n* Age over 18 years\n* Confirmed pathogenic or likely pathogenic COL3A1 mutation with vascular Ehlers-Danlos syndrome\n* Capacity to provide informed consent\n\nExclusion Criteria for those with vEDS:\n\n* Current corticosteroid use\n* Pregnancy or lactation\n* Acute illness at the time of assessment\n\nExclusion criteria for control participants\n\n* Current corticosteroid use\n* Pregnancy or lactation\n* Acute illness at time of assessment\n* Confirmed COL3A1 mutation\n* Gastrointestinal or bariatric surgery (except cholecystectomy and appendectomy)",true,"85 Years",{"count":59,"type":20},15,"2 Days","OBSERVATIONAL","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). vEDS is caused by changes in a gene called COL3A1, which makes a protein important for the structure of many tissues. While vEDS is best known for making blood vessels fragile, there is some early evidence that it may also affect fat tissue and increase the risk of problems such as insulin resistance (where the body does not respond properly to insulin) and diabetes.\n\nFat tissue is important for keeping the body healthy. It stores extra energy, but it also sends signals to other organs. If fat tissue cannot expand or work properly, fat can build up in the liver or muscles instead, leading to high blood sugar, high cholesterol, and greater risk of diabetes and heart disease.\n\nIn this study, we will invite 12-17 adults with genetically confirmed vEDS to take part, along with a group of age-, sex-, and weight-matched controls without vEDS. Participants will attend a research visit at Addenbrooke's Hospital, Cambridge. They will have measurements of body fat distribution (using a DEXA scan), a liver scan, blood tests, and a standard oral glucose tolerance test (drinking a sugary drink with blood samples before and after). Some participants may also choose to provide a small fat biopsy under local anaesthetic to allow more detailed analysis of tissue structure.\n\nThe main aim is to see whether people with vEDS show changes in fat distribution and insulin sensitivity compared to those without vEDS.",[64,26,65],"Vascular Ehlers-Danlos Syndrome","Vascular EDS (vEDS)",[67,68,69],"vascular Ehlers Danlos syndrome","insulin resistance","partial lipodystrophy","RECRUITING","2026-04-01",{"date":73,"type":39},"2026-04-08",{"date":75,"type":39},"2026-03-05",{"date":77,"type":20},"2031-04-04",{"name":79,"class":46},"Cambridge University Hospitals NHS Foundation Trust",{"id":81,"slug":82,"hasResults":11,"nctId":83,"briefTitle":84,"officialTitle":85,"acronym":86,"eligibilityCriteria":87,"healthyVolunteers":11,"sex":16,"minAge":88,"maxAge":89,"enrollmentInfo":90,"targetDuration":4,"studyType":21,"phases":92,"briefSummary":94,"conditions":95,"keywords":4,"overallStatus":70,"whyStopped":4,"lastUpdateSubmitDate":96,"lastUpdatePostDateStruct":97,"startDateStruct":99,"completionDateStruct":101,"leadSponsor":103,"locationsCount":47},"100472483","phase-3-clinical-trial-to-compare-the-efficacy-of-celiprolol-to-placebo-in-patients-with-vascular-ehlers-danlos-syndrome-100472483","NCT05432466","Clinical Trial to Compare the Efficacy of Celiprolol to Placebo in Patients With Vascular Ehlers-Danlos Syndrome","A Phase 3 Randomized, Double-Blind, Decentralized Clinical Trial to Compare the Efficacy of Celiprolol to Placebo in the Treatment of Patients With COL3A1-Positive Vascular Ehlers-Danlos Syndrome","DiSCOVER","Inclusion Criteria:\n\n1. Willingness to obtain magnetic resonance angiogram (MRA) image at local imaging facility.\n2. A genetic test confirming the presence of a pathogenic COL3A1 variant (classified as likely pathogenic or pathogenic according to ACMG\u002FAMP Guidelines.\n3. Patients must be ≥ 15 years of age at the time of randomization.\n4. Able and willing to discontinue use of β-blockers prior to randomization.\n\nExclusion Criteria:\n\n1. Lack of a COL3A1-positive test at screening (e.g., COL3A1 benign, likely benign, variant of unknown significance \\[VUS\\] or no variant) or presence of a COL3A1 variant but demonstration of a COL3A1 variant reported to be a haploinsufficiency variant.\n2. Arterial rupture or dissection, uterine rupture, and\u002For intestinal rupture within 6 months prior to Screening.\n3. Patients unable to discontinue β-blocker treatment prior to randomization.\n4. Unable or unwilling to complete the study procedures.\n5. Breastfeeding, pregnancy, or planned pregnancy during the trial.\n6. Any medical condition that in the opinion of the Investigator may pose a safety risk to the patient in this study, which may confound efficacy or safety assessment, or may interfere with study participation.\n7. Use of any prohibited medications","15 Years","64 Years",{"count":91,"type":20},150,[93],"PHASE3","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.",[64],"2025-08-19",{"date":98,"type":39},"2025-08-24",{"date":100,"type":39},"2022-11-07",{"date":102,"type":20},"2029-04-01",{"name":104,"class":105},"Acer Therapeutics Inc.","INDUSTRY",{"id":107,"slug":108,"hasResults":11,"nctId":109,"briefTitle":110,"officialTitle":111,"acronym":4,"eligibilityCriteria":112,"healthyVolunteers":11,"sex":16,"minAge":113,"maxAge":114,"enrollmentInfo":115,"targetDuration":4,"studyType":21,"phases":116,"briefSummary":117,"conditions":118,"keywords":119,"overallStatus":70,"whyStopped":4,"lastUpdateSubmitDate":123,"lastUpdatePostDateStruct":124,"startDateStruct":126,"completionDateStruct":128,"leadSponsor":130,"locationsCount":47},"100515681","heart-coherence-training-on-vascular-ehlers-danlos-syndrome-patients-100515681","NCT05994664","Heart Coherence Training on Vascular Ehlers-Danlos Syndrome Patients","The Effects Of Heart Coherence Training On Patients With Vascular Ehlers-Danlos Syndrome (HEARTMATH)","Inclusion Criteria:\n\n* Participants must be diagnosed with Vascular Ehlers-Danlos Syndrome verified by a mutation of the COL3A1 gene\n* Ages 12-45 year at the time of enrollment\n* Access to a smartphone as well as an additional device with camera and microphone\n* Stable internet access\n* English speaking\n\nExclusion Criteria:\n\n* Non-English speakers\n* Any conditions or developmental delays limiting the ability to utilize technology or follow directions.","12 Years","45 Years",{"count":19,"type":20},[23],"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 the body, which, over a period of time, can have detrimental effects both physiologically and psychologically for patients. Recent studies have begun to use biofeedback techniques to teach patients non-pharmacological strategies for managing their autonomic nervous system. One such program, Heartmath®, has been successful in helping patients lower stress, anxiety, and systolic blood pressure. This pilot trial was established to assess the effectiveness of a virtually based heart coherence program in a population with a chronic aortopathy in an effort to establish a larger, multi-provider program that also encompasses other cardiovascular populations.",[64],[120,121,122],"Cardiovascular","Mental Health","Heart Rate Variability","2024-06-27",{"date":125,"type":39},"2024-07-01",{"date":127,"type":39},"2024-04-01",{"date":129,"type":20},"2028-01-01",{"name":131,"class":46},"Baylor College of Medicine"]