[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"congenital-muscular-dystrophy\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:congenital-muscular-dystrophy":30},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,49],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":15,"eligibilityCriteria":16,"healthyVolunteers":11,"sex":17,"minAge":18,"maxAge":4,"enrollmentInfo":19,"targetDuration":22,"studyType":23,"phases":4,"briefSummary":24,"conditions":25,"keywords":31,"overallStatus":36,"whyStopped":4,"lastUpdateSubmitDate":37,"lastUpdatePostDateStruct":38,"startDateStruct":41,"completionDateStruct":43,"leadSponsor":45,"locationsCount":48},"100447167","swiss-registry-for-neuromuscular-disorders-100447167",false,"NCT05102916","Swiss Registry for Neuromuscular Disorders","Swiss Registry for Neuromuscular Disorders (Swiss-Reg-NMD)","Swiss-Reg-NMD","Inclusion Criteria:\n\n* Children, adolescents and adults diagnosed with a NMD\n* Who are living or treated for a NMD in Switzerland, and\n* Who gave informed consent\n\nExclusion Criteria:\n\n* None if diagnosis is confirmed, whenever possible, by genetic testing, or at least by biopsy and\u002For electroneuromyography, according to international standards for the diagnosis of the given NMD.","ALL","0 Years",{"count":20,"type":21},2000,"ESTIMATED","80 Years","OBSERVATIONAL","The Swiss Patient Registry for DMD\u002FBMD and SMA was launched in 2008 in order to give Swiss patients access to new therapies. It was founded with the financial support of several patient organizations and research foundations. Since 2008, children, adolescents and adults with DMD, BMD and SMA are registered with the help of all major muscle centers in Switzerland. After nearly ten years of activity, the Swiss Patient Registry for DMD\u002FBMD and SMA implemented several adaptations in 2018 to meet current and future expectations of patient's organizations, health authorities and research organizations.",[26,27,28,29,30],"SMA","DMD","BMD","IMD","Congenital Muscular Dystrophy",[27,28,29,26,32,33,34,35],"LAMA2","COL-6","CMD","NMD","RECRUITING","2026-01-13",{"date":39,"type":40},"2026-01-15","ACTUAL",{"date":42,"type":40},"2018-06-20",{"date":44,"type":21},"2071-01-01",{"name":46,"class":47},"University of Bern","OTHER",19,{"id":50,"slug":51,"hasResults":11,"nctId":52,"briefTitle":53,"officialTitle":54,"acronym":4,"eligibilityCriteria":55,"healthyVolunteers":56,"sex":17,"minAge":57,"maxAge":22,"enrollmentInfo":58,"targetDuration":4,"studyType":60,"phases":61,"briefSummary":63,"conditions":64,"keywords":4,"overallStatus":36,"whyStopped":4,"lastUpdateSubmitDate":70,"lastUpdatePostDateStruct":71,"startDateStruct":73,"completionDateStruct":75,"leadSponsor":77,"locationsCount":79},"100514716","assessments-in-patients-with-muscular-pathology-and-in-control-subjects--the-actilige-next-study-100514716","NCT05982119","Assessments in Patients With Muscular Pathology and in Control Subjects : The ActiLiège Next Study","Gait Analysis Parameter, Stair Climbing and Upper Limb Evaluation in Patients With Muscular Pathology and in Control Subjects: The ActiLiège Next Study","Inclusion criteria\n\n* For the patients:\n\n  * Genetically confirmed diagnosis of DMD, FSHD, DM1, CMT or FKRP mutations or confirmed CNM based on muscle biopsy.\n  * FSHD, DM1, CMT and CNM patients should be ambulant or in transition.\n  * DM1 and CMT patients should present sensori-motor signs on physical examination.\n  * Under the age of 20 years for patients with DMD, CNM or between the ages of 5 and 80 years for patients with FSHD, CMT and DM1.\n  * More than 2 years old for patients with FKRP mutations\n  * Non-ambulant DMD patients must be able to remain seated in an arm- or a wheelchair for at least one hour.\n  * Patients with DMD treated with corticosteroids for at least 6 months or initiated corticosteroid at V0 (except for patients under 4).\n  * Signed informed consent form by patient himself or, in case of minor patients, signed informed consent form by patient's parents or legal guardians.\n* For the control subjects:\n\n  * Ambulant boys and girls under 20 years old\n  * Signed informed consent form by patient him\u002Fherself or, in case of minor patients, signed informed consent form by patient's parents or legal guardians.\n\nExclusion Criteria:\n\n* For the patients:\n\n  * Patients with extreme cognitive disorders that limit their understanding of the exercises to be performed.\n  * Patients who have undergone a surgical procedure or who have experienced recent trauma (within fewer than 6 months) affecting the upper or lower limbs (for ambulant patients).\n  * A concomitant chronic or acute neurological, endocrine, infectious, allergic, or inflammatory pathology within the 3-week period immediately prior to inclusion.\n  * Patients who are participating in an interventional clinical trial.\n  * DMD patients in transition who are not on corticosteroids.\n* For the control subjects:\n\n  * Patients who have undergone a surgical procedure or who have experienced recent trauma (within fewer than 6 months) affecting the upper or lower limbs.\n  * Elite athletes (at the national level).\n  * A chronic or acute muscular, neurological, infectious, or inflammatory pathology within the 3-week period immediately prior to inclusion.\n  * An orthopedic, neuromuscular, or neurological pathology that affects the quality of the subject's walking gait.",true,"1 Year",{"count":59,"type":21},300,"INTERVENTIONAL",[62],"NA","The objective of the ActiLiège Next study is to collect longitudinal data from patients and control subjects using a wearable magneto-inertial device. By collecting natural history data in various neuromuscular disorders (Duchenne Muscular Dystrophy, Fascioscapulohumeral Muscular Dystrophy, Myotonic Dystrophy 1, Charcot-Marie-Tooth, Centronuclear Myopathy, Congenital Muscular Dystrophy), we aim to validate digital outcome measures to continuously assess motor function in real-life.",[65,66,67,68,69,30],"Duchenne Muscular Dystrophy","Fascioscapulohumeral Muscular Dystrophy","Myotonic Dystrophy 1","Charcot-Marie-Tooth","Centronuclear Myopathy","2025-05-15",{"date":72,"type":40},"2025-05-20",{"date":74,"type":40},"2020-07-10",{"date":76,"type":21},"2026-03",{"name":78,"class":47},"Centre Hospitalier Universitaire de Liege",8]