[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"ehlers-danlos-syndrome\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:ehlers-danlos-syndrome":27},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,6,0,[8,47,139,166,204,242],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":18,"enrollmentInfo":19,"targetDuration":4,"studyType":22,"phases":23,"briefSummary":25,"conditions":26,"keywords":30,"overallStatus":34,"whyStopped":4,"lastUpdateSubmitDate":35,"lastUpdatePostDateStruct":36,"startDateStruct":39,"completionDateStruct":41,"leadSponsor":43,"locationsCount":46},"100460769","phase-3-the-ultrasound-guided-dextrose-prolotherapy-in-ehlers-danlos-syndrome-patients-100460769",false,"NCT05279937","The Ultrasound-Guided Dextrose Prolotherapy in Ehlers-Danlos Syndrome Patients","The Use of Ultrasound-Guided Dextrose Prolotherapy in Low Back Pain in Patients With Hypermobile-Type, Ehlers-Danlos Syndrome","Inclusion Criteria:\n\n* Men and women between the ages of 18-75\n* Subjects who resent to Tulane Institute of Sports Medicine and Tulane Lakeside with low back pain that is diagnosed as chronic (\\>3 months) SI dysfunction or myofascial lumbar pain with a diagnosis of hEDS per The International Consortium on Ehlers-Danlos Syndrome and Related Disorders diagnostic criteria.\n* Diagnosis will include but not be limited to physical exam findings consistent with tenderness to palpation over the sacroiliac joint (SIJ) or posterior superior iliac crest, and upper outer quadrant of the gluteus maximus.\n* Diagnosis will also include US-guided tenderness to palpation of the thoracolumbar facial complex insertion into the posterior superior iliac spine (PSIS), SI, or gluteus maximus.\n* Further testing will include US evaluation using a General Electric Logiq E ultrasound machine to look for any evidence of structural abnormality or reactive hyperemia of the TLFC, LPSL, multifidus or gluteus maximus.\n\nExclusion Criteria:\n\n* Patients \\>75 and \\\u003C 18 years old.\n* Any patient with evidence of lumbar radiculopathy, acute lower back pain, pregnancy, prior lumbosacral surgery, opiate use within the last 6 months, steroid exposure within 6 weeks, NSAID exposure within 2 weeks.\n* Patients who are unwilling to stop taking or admit to receiving NSAIDs or any form of corticosteroids during the study.\n* Patients with a history of bleeding disorders, severe thrombocytopenia, immunodeficiency disorder, and hypersensitivity of local anesthetics of amide type will be excluded along with any patient who actively has systemic bacterial infection with fever, skin infection over the injection site, or takes anti-platelet\u002Fanti-coagulant medication.\n* Patients with comorbidities such as diabetes mellitus, rheumatoid arthritis, lupus, or any other condition that increases risk of infection may be excluded from the study pending severity and current treatment of their condition.\n* Patients receiving workers compensation, disability or who are involved in litigation will also be excluded due to risk of secondary gain.\n* Physical exam findings, X-rays, and US imaging will be utilized to determine eligibility.","ALL","18 Years","75 Years",{"count":20,"type":21},40,"ESTIMATED","INTERVENTIONAL",[24],"PHASE3","1. Specific Aim: To show the safety and efficacy of prolotherapy injection for chronic sacroiliac and myofascial lumbar pain while standardizing an ultrasound guided injection technique\n2. Specific Aim: To demonstrate that dextrose prolotherapy subjectively decreases lumbar back pain (LBP) associated with chronic sacroiliac (SI) and myofascial lumbar back pain\u002Finjury in patients with Hypermobile-Type Ehlers-Danlos Syndrome (hEDS).\n3. Specific Aim: To use ultrasound (US) guidance to identify SI and myofascial lumbar back pain\u002Finjury for targeted dextrose prolotherapy treatment and to provide objective measures of decreasing inflammation via Power Doppler and ligament repair.\n4. Specific Aim: To determine if US-guided dextrose prolotherapy decreases the direct costs of care for chronic LBP in contrast to conventional therapies by reducing return visits, specialty referrals, physical therapy, medications, and unnecessary procedures.",[27,28,29],"Ehlers-Danlos Syndrome","Low Back Pain","Sacroiliac Instability",[31,32,33],"Prolotherapy","Dextrose","Ultrasound","NOT_YET_RECRUITING","2026-02-26",{"date":37,"type":38},"2026-03-02","ACTUAL",{"date":40,"type":21},"2026-06",{"date":42,"type":21},"2027-06",{"name":44,"class":45},"Tulane University","OTHER",1,{"id":48,"slug":49,"hasResults":11,"nctId":50,"briefTitle":51,"officialTitle":52,"acronym":4,"eligibilityCriteria":53,"healthyVolunteers":54,"sex":16,"minAge":55,"maxAge":4,"enrollmentInfo":56,"targetDuration":58,"studyType":59,"phases":4,"briefSummary":60,"conditions":61,"keywords":106,"overallStatus":129,"whyStopped":4,"lastUpdateSubmitDate":130,"lastUpdatePostDateStruct":131,"startDateStruct":133,"completionDateStruct":135,"leadSponsor":137,"locationsCount":46},"100424417","unhide-project-a-digital-health-platform-to-collect-lifestyle-data-for-brain-inflammation-research-100424417","NCT04806620","Unhide® Project: A Digital Health Platform to Collect Lifestyle Data for Brain Inflammation Research","Unhide® Project Also Known as The Unhide® Solve Together Unified Platform","Participants may be either self-diagnosed, or diagnosed by a physician with the following conditions:\n\n* Infection-associated chronic conditions such as Long COVID, chronic Lyme, myalgic encephalomyelitis (ME\u002FCFS), and post-acute neuropsychiatric syndrome (PANS\u002FPANDAS).\n* Neuroimmune, developmental, autonomic, and neurological conditions like migraines, dysautonomia, POTS, multiple sclerosis, and autism spectrum disorder.\n* Autoimmune diseases such as Lupus, Sjogren's Disease, rheumatoid arthritis, myasthenia gravis, ankylosing spondylitis, and related autoimmune conditions.\n\nInflammatory gastrointestinal conditions such as Crohn's Disease, Celiac Disease, and ulcerative colitis.\n\n* Behavioral and mood disorders such as anxiety, depression, bipolar disorder, PTSD, eating disorders, OCD, and other related conditions.\n* \"Healthy\" people (without brain inflammation), including unaffected individuals, unaffected individuals in the same household, and unaffected individuals who are married to relatives and family members.\n* Have consistent internet access and a cell phone, tablet, or PC since this is an online or app-based platform that requires entering data and completing surveys.\n* Currently live in the United States\n* Be able to participate in English (stay tuned for updates about the Spanish language version)\n* Be willing to share symptom and health data through the platform",true,"2 Years",{"count":57,"type":21},10000,"10 Years","OBSERVATIONAL","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 neuroinflammatory conditions. Participants in the United States aged 2 years and older will provide self-reported health data, biometrics, and symptom diaries through the MyDataHelps™ app (branded as unhide® for this study). The goal is to create comprehensive longitudinal profiles to facilitate research into disease subtypes, causes, diagnostics, and potential treatments, as well as to identify potential participants for future optional studies. \"Healthy\" individuals without brain inflammation are also eligible to participate.\n\nThe digital health research platform used in this study was originally developed and designed by Solve M.E and was called SolveTogether. The Brain Inflammation Collaborative (BIC) expanded upon Solve M.E.'s work to include related diagnoses, pediatric participants, enhance symptom tracking, and more. BIC and Solve M.E. combined Solve Together and unhide®, to create The unhide® Solve Together Unified Platform in 2025.",[62,63,64,65,66,67,68,69,70,71,72,73,74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91,92,93,94,95,96,97,98,99,100,101,102,103,104,105],"Post-Acute COVID-19 Syndrome","ME\u002FCFS","Rheumatic Arthritis","Juvenile Rheumatoid Arthritis (JRA)","Psoriatic Arthritis (PsA)","Ankylosing Spondylitis (AS)","Autoimmune Encephalitis","Celiac Disease","Celiac Disease in Children","Chronic Lyme Disease","Post-treatment Lyme Disease Syndrome","Crohn's Disease","Dysautonomia","Anorexia Nervosa","Bulimia Nervosa","ARFID","Avoidant \u002F Restrictive Food Intake Disorder","Ehlers Danlos Syndrome","Endometriosis","Fibromyalgia (FM)","Long COVID","Lupus","Migraines","Mast Cell Activation Syndrome","Multiple Sclerosis","Myalgic Encephalomyelitis (ME)","Myasthenia Gravis, Generalized","Myasthenia Gravis in Children","Narcolepsy","Obsessive Compulsive Disorder (OCD)","PANDAS","Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)","POTS - Postural Orthostatic Tachycardia Syndrome","General Anxiety Disorder, Social Anxiety Disorder","PTSD - Post Traumatic Stress Disorder","Psoriasis","Traumatic Brain Injury","Tourette's Syndrome","Inflammatory Bowel Disease (IBD)","Autoimmune Diseases","Neurological Diseases or Conditions","Psychiatric Disorder","Sjogren's Syndrome","Ulcerative Colitis and Crohn's Disease",[82,107,108,109,110,111,112,113,114,115,63,116,117,118,119,120,84,121,122,123,124,125,126,127,128],"Myalgic Encephalomyelitis","Chronic Fatigue Syndrome","Longitudinal Natural History Study","Observational","Neuroinflammatory Disease","Brain inflammation","Neuroinflammatory disorders","PANS\u002FPANDAS","Autoimmune encephalitis","Dysautonomia \u002F POTS","Multiple sclerosis","Autoimmune disease","Inflammatory bowel disease (Crohn's, ulcerative colitis)","Celiac disease","Mood disorders (anxiety, depression, bipolar, PTSD, OCD)","Mobile health app","Patient registry","Wearable devices","Fatigue","Post-exertional malaise","Brain Fog","Mental health","RECRUITING","2026-01-20",{"date":132,"type":38},"2026-01-22",{"date":134,"type":38},"2023-07-05",{"date":136,"type":21},"2030-12-31",{"name":138,"class":45},"Brain Inflammation Collaborative",{"id":140,"slug":141,"hasResults":11,"nctId":142,"briefTitle":143,"officialTitle":144,"acronym":145,"eligibilityCriteria":146,"healthyVolunteers":54,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":147,"targetDuration":149,"studyType":59,"phases":4,"briefSummary":150,"conditions":151,"keywords":152,"overallStatus":129,"whyStopped":4,"lastUpdateSubmitDate":157,"lastUpdatePostDateStruct":158,"startDateStruct":160,"completionDateStruct":162,"leadSponsor":164,"locationsCount":46},"100372735","registry-of-ehlers-danlos-syndrome-100372735","NCT04133272","Registry of Ehlers-Danlos Syndrome","Registry of Ehlers-Danlos Syndrome That Collects Clinical, Functional, Genetic, Genealogical, Imaging, Surgical, Treatment, Quality of Life Data. Data Are Linked to Patients' Biological Samples, When Available","RED","Inclusion Criteria:\n\n* All Ehlers-Danlos Syndrome patients, including prenatal and fetal diagnosis of Ehlers-Danlos Syndrome\n\nExclusion Criteria:\n\n* Any condition unrelated to Ehlers-Danlos Syndrome",{"count":148,"type":21},3000,"25 Years","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: personal information, clinical data, genetic data, genealogical data, surgeries, etc.\n\nThis approach has been developed to corroborate and integrate data from different sources and evaluating several aspects of diseases and to correlate genetic background and phenotypic outcomes, in order to better investigate disease pathophysiology. Due to legal requirements, institutional directives and organizational issues, we are unable to include individuals residing outside Italy in the registry at this time. We are currently engaged in the preparation of a recruitment process for individuals residing outside Italy.",[27],[153,154,155,156],"Disease Registry","Natural History Study","Disease Evolution","Genotype-Phenotype Correlation","2025-11-17",{"date":159,"type":38},"2025-11-20",{"date":161,"type":38},"2014-06",{"date":163,"type":21},"2033-01",{"name":165,"class":45},"Luca Sangiorgi",{"id":167,"slug":168,"hasResults":11,"nctId":169,"briefTitle":170,"officialTitle":170,"acronym":171,"eligibilityCriteria":172,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":4,"enrollmentInfo":173,"targetDuration":4,"studyType":22,"phases":175,"briefSummary":177,"conditions":178,"keywords":186,"overallStatus":129,"whyStopped":4,"lastUpdateSubmitDate":195,"lastUpdatePostDateStruct":196,"startDateStruct":198,"completionDateStruct":200,"leadSponsor":202,"locationsCount":46},"100213022","complex-aortic-aneurysm-repair-using-physician-modified-endografts-and-custom-made-devices-100213022","NCT02050113","Complex Aortic Aneurysm Repair Using Physician Modified Endografts and Custom Made Devices","CARPE-CMD","Inclusion Criteria:\n\n* A patient may be suitable for inclusion in the study if the patient has at least one of the following:\n\n  1. Aortic or aortoiliac aneurysm with diameter ≥5.5 cm\n  2. Aortic or aortoiliac aneurysm with a history of growth ≥1.0 cm per year, or clinical indication for aneurysm repair based on symptoms\n\n     General Inclusion Criteria\n\n  \u003C!-- -->\n\n  1. Cannot be treated with a currently available non-modified approved device\n  2. Symptomatic on presentation and unsafe to wait for the time necessary to obtain a currently available non-modified approved device\n  3. At least 18 years of age\n  4. Not pregnant or breastfeeding\n  5. Willing and able to comply with five years of follow-up\n  6. Willing and able to provide informed consent prior to enrollment\n  7. No systemic or local infection that may increase the risk of endovascular graft infection\n  8. High risk for open surgical repair based on any of the factors below:\n\n     a. Anatomic i. Previous abdominal surgery ii. Previous left-sided thoracotomy (if the proposed open repair would require dissection of the thoracic aorta) iii. Previous aortic surgery b. Physiologic i. ASA Category III or higher ii. Age \\>70 years iii. Previous myocardial infarction, coronary artery disease, or coronary artery stent iv. Coronary stress test with a reversible perfusion defect v. Congestive heart failure vi. COPD\n\n     Exclusion Criteria:\n* Exclusion Criteria Medical Exclusion Criteria\n\n  1. Cultural objection to receipt of blood or blood products\n  2. Allergy or sensitivity to stainless steel, polyester, polypropylene, solder (tin, silver), gold, or nitinol\n  3. Anaphylactic reaction to contrast that cannot be adequately pre-medicated\n  4. Uncorrectable coagulopathy\n  5. Unstable angina (defined as angina with a progressive increase in symptoms, new onset at rest or nocturnal angina, or onset of prolonged angina)\n  6. Patient has active malignancy with life expectancy of less than 2 years\n  7. Patient has life expectancy less than two years\n\nAnatomical Exclusion Criteria\n\n1. Significant occlusive disease, tortuosity, or calcification that would prevent endovascular access\n2. Proximal neck length ≤25 mm\n3. Proximal neck, measured outer wall to outer wall on a sectional image (CT)\n\n   1. For use of Zenith Flex: diameter \\>32 mm or \\\u003C18 mm\n   2. For use of Zenith TX2: diameter \\>38 mm or \\\u003C24 mm (for proximal and distal neck diameter)\n4. Proximal neck angulated more than 60 degrees relative to the long axis of the aneurysm\n5. Proximal neck diameter change over the length of the proximal seal zone \\>4 mm\n6. Proximal seal site with a circumferential thrombus\u002Fatheroma\n7. Iliac artery diameter, measured inner wall to inner wall on a sectional image (CT) \\\u003C7.0 mm at any point along access length (prior to deployment)\n8. Ipsilateral iliac artery fixation site diameter, measured inner wall on a sectional image (CT) \\>21 mm at distal fixation site\n9. Iliac artery distal fixation site \\\u003C10 mm in length\n10. Non-bifurcated segment of any artery to be stented \\\u003C 15 mm in length\n11. Artery to be stented with a maximum diameter \\\u003C3 mm or \\>10 mm at the vessel ostium\n12. Inability to maintain at least one patent hypogastric artery",{"count":174,"type":21},600,[176],"NA","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 complex abdominal aneurysms, aortoiliac aneurysms, thoracoabdominal aneurysms and aortic arch aneurysms who (1) have anatomy not suitable for endovascular repair using grafts currently marketed in the United States,(2) are deemed unsafe to wait the required time necessary for commercial endograft manufacturing, and (3) are at high risk for open surgical repair. Amendment to the study has created a cohort open to people with connective tissue diseases such as Marfan, Ehlers-Danlos or Loey-Dietz syndromes to enroll in the trial. An additional amendment to the study allows the use of a custom made device to treat an aneurysm in the aortic arch.",[179,180,181,182,183,27,184,185],"Complex Aortic Aneurysms","Thoracoabdominal Aneurysms","Pararenal Aneurysms","Juxtarenal Aneurysms","Marfan Syndrome","Loeys-Dietz Syndrome","Aortic Arch Aneurysm",[179,180,187,188,189,190,191,192,193,194],"Pararenal Aortic Aneurysms","Juxtarenal Renal Aneurysms","Endovascular Branch Graft","Fenestrated Stent Graft","Abdominal Aortic Aneurysm","Endovascular","Aortic Dissection","Aortic Arch Aneurysms","2025-10-20",{"date":197,"type":38},"2025-10-22",{"date":199,"type":4},"2014-03",{"date":201,"type":21},"2030-03",{"name":203,"class":45},"Andres Schanzer",{"id":205,"slug":206,"hasResults":11,"nctId":207,"briefTitle":208,"officialTitle":208,"acronym":4,"eligibilityCriteria":209,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":210,"targetDuration":4,"studyType":59,"phases":4,"briefSummary":212,"conditions":213,"keywords":230,"overallStatus":129,"whyStopped":4,"lastUpdateSubmitDate":232,"lastUpdatePostDateStruct":233,"startDateStruct":235,"completionDateStruct":237,"leadSponsor":239,"locationsCount":46},"100557519","flower-following-longitudinal-outcomes-with-epidemiology-for-rare-diseases-100557519","NCT06539169","FLOWER: Following Longitudinal Outcomes With Epidemiology for Rare Diseases","Inclusion Criteria:\n\n* Any person with a known or suspected rare disease, defined by their prevalence of fewer than 200,000 individuals nationwide. Diseases include but are not limited to:\n\nAlpha- or Beta- Thalassemia Amyloidosis Amyotrophic Lateral Sclerosis (ALS) Creutzfeldt-Jakob disease (CJD) Cystic Fibrosis (CF) Duchenne Muscular Dystrophy (DMD) Early-onset Alzheimer's Disease Ehlers-Danlos Syndrome (EDS) Huntington's Disease (HD) Gaucher Disease GM1 Gangliosidosis Myasthenia Gravis Pompe Disease Sickle Cell Disease Transthyretin Amyloid Cardiomyopathy (ATTR-CM) Transthyretin Amyloid Polyneuropathy (ATTR-PN)\n\n\\- Patients or their legally-authorized representative must be willing and able to provide informed consent (and assent, if applicable). Deceased persons may participate via consent of their legally-authorized representative in accordance with applicable Federal and state laws\n\nExclusion Criteria:\n\n* Patient or LAR is unable to provide informed consent.\n* Patient resides in a country other than the United States and is unable to provide access to medical records.",{"count":211,"type":21},1000,"FLOWER is a completely virtual, nationwide, real-world observational study to collect, annotate, standardize, and report clinical data for rare diseases. Patients participate in the study by electronic consent (eConsent) and sign a medical records release to permit data collection. Medical records are accessed from institutions directly via eFax or paper fax, online from patient electronic medical record (EMR) portals, direct from DNA\u002FRNA sequencing and molecular profiling vendors, and via electronic health information exchanges. Patients and their treating physicians may also optionally provide medical records. Medical records are received in or converted to electronic\u002Fdigitized formats (CCDA, FHIR, PDF), sorted by medical record type (clinic visit, in-patient hospital, out-patient clinic, infusion and out-patient pharmacies, etc.) and made machine-readable to support data annotation, full text searches, and natural language processing (NLP) algorithms to further facilitate feature identification.",[214,215,216,217,218,219,220,221,27,222,223,224,225,226,227,228,229],"Alpha-Thalassemia","Beta-Thalassemia","Amyloidosis","Amyotrophic Lateral Sclerosis","Creutzfeld-Jakob Disease","Cystic Fibrosis","Duchenne Muscular Dystrophy","Early-Onset Alzheimer Disease","Huntington Disease","Gaucher Disease","GM1 Gangliosidosis","Myasthenia Gravis","Pompe Disease","Sickle Cell Disease","Transthyretin Amyloid Cardiomyopathy","Rare Diseases",[231],"rare diseases","2024-11-12",{"date":234,"type":38},"2024-11-14",{"date":236,"type":38},"2024-06-10",{"date":238,"type":21},"2026-06-10",{"name":240,"class":241},"xCures","INDUSTRY",{"id":243,"slug":244,"hasResults":11,"nctId":245,"briefTitle":246,"officialTitle":246,"acronym":247,"eligibilityCriteria":248,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":4,"enrollmentInfo":249,"targetDuration":4,"studyType":22,"phases":251,"briefSummary":252,"conditions":253,"keywords":4,"overallStatus":34,"whyStopped":4,"lastUpdateSubmitDate":254,"lastUpdatePostDateStruct":255,"startDateStruct":257,"completionDateStruct":259,"leadSponsor":261,"locationsCount":46},"100541946","evaluation-of-the-effects-of-cross-linking-on-the-biomechanical-characteristics-of-skin-samples-from-patients-with-classic-or-hypermobile-ehlers-danlos-syndrome-100541946","NCT06336473","Evaluation of the Effects of Cross Linking on the Biomechanical Characteristics of Skin Samples From Patients With Classic or Hypermobile Ehlers-Danlos Syndrome","SEDSKIN","Inclusion Criteria:\n\n* Patient aged 18 or over, having read and signed the consent form for participation in the study\n* Patient with classic or hypermobile Ehlers-Danlos syndrome\n* Regularly followed-up at the non-vascular Ehlers-Danlos Syndrome Reference Center at Garches Hospital.\n\nExclusion Criteria:\n\n* Patient under court protection, guardianship or curatorship\n* Pregnant or breast-feeding patient\n* Patient not affiliated to the French social security system\n* Impossibility of giving the subject informed information and\u002For written informed consent: dementia, psychosis, disturbed consciousness, non-French-speaking patient\n* Contraindication to anaesthesia or allergy to local anaesthetic product",{"count":250,"type":21},28,[176],"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).",[27],"2024-06-21",{"date":256,"type":38},"2024-06-24",{"date":258,"type":21},"2024-09-03",{"date":260,"type":21},"2025-07-31",{"name":262,"class":45},"GCS Ramsay Santé pour l'Enseignement et la Recherche"]