[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"muscular-dystrophy-facioscapulohumeral\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:muscular-dystrophy-facioscapulohumeral":25},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,5,0,[8,42,68,103,129],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":13,"acronym":14,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":18,"enrollmentInfo":19,"targetDuration":4,"studyType":22,"phases":4,"briefSummary":23,"conditions":24,"keywords":26,"overallStatus":29,"whyStopped":4,"lastUpdateSubmitDate":30,"lastUpdatePostDateStruct":31,"startDateStruct":34,"completionDateStruct":36,"leadSponsor":38,"locationsCount":41},"100581205","motor-outcomes-to-validate-evaluations-in-pediatric-fshd-move-peds-100581205",false,"NCT06847282","Motor Outcomes to Validate Evaluations in Pediatric FSHD (MOVE Peds)","MOVE Peds","Inclusion Criteria:\n\n* Age 5-17 years.\n* Genetically confirmed FSHD (types 1 or 2).\n* Symptomatic weakness (facial, shoulder, core, or limb weakness)\n* Able to complete a 10-meter walk without the support of another person in less than 12 seconds (canes, walking sticks, and braces allowed; no walker). In order to include early onset participants up to 8 individuals will be entered with baseline 10MWR \\> 12 seconds or who are no longer ambulatory (≤10%)\n\nExclusion Criteria:\n\n* Unwilling or unable to provide informed consent or assent. Any other medical condition which in the opinion of the investigator would interfere with study participation.\n* Malignancy with ongoing treatment with chemotherapeutic agents or anabolic agents\n* Use of immunosuppressants including prednisone or performance enhancing drugs including testosterone within 6 months\n* Pregnancy\n* Recent or ongoing infection\n* Presence of contraindication to performance of MRI: pacemaker, metallic foreign body in eye, brain aneurysm clip (unless documented as MRI compatible)\n* In the opinion of the investigator unable to follow directions for standardized testing\n\n  * Note: Not being able to complete MRI will not result in a screen failure. If subject is not able to complete the procedure due to fear or anxiety, they will have the opportunity to try again at later visits. However, Subject must be willing to attempt to perform the MRI to meet inclusion\u002Fexclusion criteria","ALL","5 Years","17 Years",{"count":20,"type":21},80,"ESTIMATED","OBSERVATIONAL","The primary goal of this study is to validate motor and functional outcomes and refine clinical trial strategies for pediatric-onset FSHD",[25],"Muscular Dystrophy, Facioscapulohumeral",[27,28],"FSHD","Pediatric","RECRUITING","2026-02-24",{"date":32,"type":33},"2026-02-25","ACTUAL",{"date":35,"type":33},"2025-05-22",{"date":37,"type":21},"2028-05",{"name":39,"class":40},"University of Kansas Medical Center","OTHER",7,{"id":43,"slug":44,"hasResults":11,"nctId":45,"briefTitle":46,"officialTitle":47,"acronym":48,"eligibilityCriteria":49,"healthyVolunteers":11,"sex":16,"minAge":50,"maxAge":51,"enrollmentInfo":52,"targetDuration":4,"studyType":54,"phases":55,"briefSummary":57,"conditions":58,"keywords":59,"overallStatus":29,"whyStopped":4,"lastUpdateSubmitDate":30,"lastUpdatePostDateStruct":60,"startDateStruct":61,"completionDateStruct":63,"leadSponsor":65,"locationsCount":67},"100571518","phase-1-clenbuterol-to-target-dux4-in-fshd-100571518","NCT06721299","Clenbuterol to Target DUX4 in FSHD","Clenbuterol to Target DUX4 in FSHD (Target FSHD): Open Label Safety and Tolerability Study of 3 Doses of Clenbuterol","Target FSHD","Inclusion Criteria:\n\n* Genetically confirmed diagnosis of FSHD type 1 or 2, or have a clinical diagnosis of FSHD type 1 with a first degree relative with confirmed mutation\n* between 18 and 75 years of age\n* with a clinical severity score between 0 and 10\n* Able to walk 30ft without support of another person\n* Showing anti-gravity strength on at least one of the tibialis anterior muscles or having an MRI eligible muscle in the leg for needle biopsy\n* willing and able to provide informed consent\n* agree to follow the contraceptive requirement for duration of the study\n\nExclusion Criteria:\n\n* Pregnant or planning to become pregnant during the conduct of the study\n* have a poorly controlled medical condition\n* Were involved in a study of an experimental agent within 3 months of enrollment\n* Are taking beta-blockers or anabolic agent or potassium wasting diuretics\n* Are taking or are planning to take a GLP-1 Agonist during trial\n* have any condition or contraindication which would interfere with testing or preclude use of beta-agonist\n* Are taking blood thinners or medications which make a needle muscle biopsy contra-indicated\n* Has contraindication to lactose such as galactosmia, lactase deficiency and glucose-galactose malabsorption. For those who are lactose intolerant, the PI will determine acceptability based on tolerance reaction to lactose\n* Are taking any medications or therapies with a contraindication to Clenbuterol","18 Years","75 Years",{"count":53,"type":21},30,"INTERVENTIONAL",[56],"PHASE1","The purpose of this study is to determine if Clenbuterol is a therapeutic option for FSHD by determining the safety and tolerability of the medication at three different dose levels.",[25],[27],{"date":32,"type":33},{"date":62,"type":33},"2025-06-25",{"date":64,"type":21},"2028-07",{"name":66,"class":40},"Jeffrey Statland",3,{"id":69,"slug":70,"hasResults":11,"nctId":71,"briefTitle":72,"officialTitle":72,"acronym":4,"eligibilityCriteria":73,"healthyVolunteers":11,"sex":16,"minAge":74,"maxAge":4,"enrollmentInfo":75,"targetDuration":77,"studyType":22,"phases":4,"briefSummary":78,"conditions":79,"keywords":89,"overallStatus":29,"whyStopped":4,"lastUpdateSubmitDate":93,"lastUpdatePostDateStruct":94,"startDateStruct":96,"completionDateStruct":98,"leadSponsor":100,"locationsCount":102},"100624400","betterlife-fshd-a-patient-driven-health-and-research-platform-100624400","NCT07409142","BetterLife FSHD: A Patient-driven Health and Research Platform","Inclusion Criteria:\n\n* Individuals with a clinical or genetic diagnosis of FSHD, or individuals with a family history of FSHD who are showing symptoms\n* Age 1 year or older\n* Residing in the United States or its territories\n* If age 18 or older, individual must be able and willing to provide consent\n* If under age 18, individual must be able and willing to provide assent, when applicable, and have a parent or legal guardian register and provide consent\n\nExclusion Criteria:\n\n* Individuals residing outside the United States or its territories\n* Unable or unwilling to provide consent, or assent, when applicable","1 Year",{"count":76,"type":21},5000,"100 Years","BetterLife FSHD is a registry platform built to support people living with FSHD. It connects patients with personalized resources, tools, and research opportunities that match their health experiences and needs. At the same time, BetterLife collects secure health and experience data from patients to support research. This data is shared with researchers to help better understand FSHD and work toward improved care, treatments, and outcomes for the community.\n\nLearn more and enroll at: www.BetterLifeFSHD.org",[80,81,82,83,27,84,85,86,87,88,25],"FSH","FSH Muscular Dystrophy","FSHD - Facioscapulohumeral Muscular Dystrophy","FSHD1","FSHD2","Facioscapulohumeral Muscular Dystrophy","Facioscapulohumeral Muscular Dystrophy 1","Facioscapulohumeral Muscular Dystrophy 2","Facioscapulohumeral Muscular Dystrophy (FSHD)",[27,90,81,83,84,91,92],"Registry","Facioscapulohumeral dystrophy","facioscapulohumeral muscular dystrophy","2026-02-19",{"date":95,"type":33},"2026-02-20",{"date":97,"type":33},"2024-08-02",{"date":99,"type":21},"2060-01",{"name":101,"class":40},"FSHD Society",1,{"id":104,"slug":105,"hasResults":11,"nctId":106,"briefTitle":107,"officialTitle":108,"acronym":109,"eligibilityCriteria":110,"healthyVolunteers":111,"sex":16,"minAge":50,"maxAge":112,"enrollmentInfo":113,"targetDuration":4,"studyType":22,"phases":4,"briefSummary":115,"conditions":116,"keywords":117,"overallStatus":29,"whyStopped":4,"lastUpdateSubmitDate":120,"lastUpdatePostDateStruct":121,"startDateStruct":123,"completionDateStruct":125,"leadSponsor":127,"locationsCount":102},"100533543","magnetic-resonance-imaging-and-ultrasound-comparison-with-load-evaluation-100533543","NCT06227182","Magnetic Resonance Imaging and Ultrasound Comparison With Load Evaluation","Ultrasound and Magnetic Resonance Imaging for Assessing Muscle Contractile Performance in FSHD - An Exploratory Study","MUSCLE+","Inclusion Criteria:\n\n* Age between 18 and 70 years.\n* Informed consent is given by the participant.\n* Ability to read and understand written and spoken instruction in Dutch.\n* Willingness and ability to understand nature and content of the study\n\nExclusion Criteria:\n\n* BMI ≥ 35\n* Other diseases that could diffusely affect muscle integrity or disturb the imaging appearance beyond that what can be extrapolated.\n* Wheelchair dependence\n* Pregnancy\n* Stage II: Any contra-indications for MRI, including:\n\n  * Claustrophobia\n  * Pacemakers and defibrillators\n  * Nerve stimulators\n  * Intracranial clips\n  * Intraorbital or intraocular metallic fragments\n  * Cochlear implants and ferromagnetic implants (e.g. implant for scoliosis)\n  * Inability to lie supine for 60 minutes\n  * Necessity of (continuous) daytime ventilation\n  * Scoliosis surgery",true,"70 Years",{"count":114,"type":21},100,"Facioscapulohumeral dystrophy (FSHD) is one of the most common hereditary neuromuscular disorders (NMD), with an estimated prevalence of 2000 patients in the Netherlands. Magnetic resonance imaging (MRI) and muscle ultrasound have contributed to an enhanced understanding of the pathophysiology of Facioscapulohumeral Muscular Dystrophy (FSHD). Previously, our group demonstrated the potential presence of an intermediate factor between muscle fiber loss and clinical weakness in FSHD. The influence of disrupted muscle architecture in FSHD on muscle contractile efficiency is a likely candidate for this factor, and remains relatively unexplored. In this study, we aim to assess the use of ultrasound-defined contractile performance, in comparison with current measures including structural MRI, for monitoring disease progression in FSHD.",[25],[118,119],"Magnetic Resonance Imaging","Muscle Ultrasound","2025-01-10",{"date":122,"type":33},"2025-01-13",{"date":124,"type":33},"2024-04-10",{"date":126,"type":21},"2027-01-31",{"name":128,"class":40},"Radboud University Medical Center",{"id":130,"slug":131,"hasResults":11,"nctId":132,"briefTitle":133,"officialTitle":133,"acronym":4,"eligibilityCriteria":134,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":135,"targetDuration":4,"studyType":22,"phases":4,"briefSummary":137,"conditions":138,"keywords":139,"overallStatus":29,"whyStopped":4,"lastUpdateSubmitDate":143,"lastUpdatePostDateStruct":144,"startDateStruct":146,"completionDateStruct":148,"leadSponsor":150,"locationsCount":102},"100555854","disease-burden-and-living-situation-of-patients-with-facioscapulohumeral-muscular-dystrophy-100555854","NCT06517498","Disease Burden and Living Situation of Patients With Facioscapulohumeral Muscular Dystrophy","Inclusion Criteria:\n\n* Having been diagnosed as Facioscapulohumeral Muscular Dystrophy\n\nExclusion Criteria:\n\n* No",{"count":136,"type":21},300,"The goal of this observational study is to learn the patient journey, disease burden, living situation, quality of life and etc. in patients with Facioscapulohumeral Muscular Dystrophy in all sex\u002Fgender and age groups. The main questions it aims to answer are:\n\n1. What's the patient journey of patients with Facioscapulohumeral Muscular Dystrophy?\n2. How does Facioscapulohumeral Muscular Dystrophy burden the patients?\n3. How's the quality of life of patients with Facioscapulohumeral Muscular Dystrophy?\n\nPatients with Facioscapulohumeral Muscular Dystrophy will be asked to:\n\n1. fill a questionnaire.\n2. be interviewed and answer questions about their illness experience, economic burden, quality of life and etc.\n\nMedical experts on Facioscapulohumeral Muscular Dystrophy will be asked to be interviewed and answer questions about understanding on the disease and the patients.",[25],[85,140,141,142],"Disease Burden","Quality of Life","Living Situation","2024-07-18",{"date":145,"type":33},"2024-07-24",{"date":147,"type":33},"2024-03-01",{"date":149,"type":21},"2025-07",{"name":151,"class":40},"Xi'an Jiaotong University"]