[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100362621":3},{"organization":4,"armGroups":7,"interventions":14,"overallOfficials":19,"centralContacts":24,"locations":33,"responsibleParty":50,"collaborators":10,"id":52,"slug":53,"hasResults":54,"nctId":55,"briefTitle":56,"officialTitle":57,"acronym":10,"eligibilityCriteria":58,"healthyVolunteers":54,"sex":59,"minAge":10,"maxAge":10,"enrollmentInfo":60,"targetDuration":63,"studyType":64,"phases":10,"briefSummary":65,"conditions":66,"keywords":68,"overallStatus":35,"whyStopped":10,"lastUpdateSubmitDate":73,"lastUpdatePostDateStruct":74,"startDateStruct":77,"completionDateStruct":79,"leadSponsor":81,"locationsCount":82},{"fullName":5,"class":6},"Newcastle University","OTHER",[8],{"label":9,"type":10,"description":11,"interventionNames":12},"Participants with FSHD",null,"Patients with a confirmed or pending diagnosis of FSHD, living in the UK are eligible to join the registry. Parents\u002Fguardians can register a child under 16 years old.",[13],"Other: Patient Registry",[15],{"type":6,"name":16,"description":17,"armGroupLabels":18,"otherNames":10},"Patient Registry","Participants who have volunteered to participate will complete various questionnaires relating to their condition.",[9],[20],{"name":21,"affiliation":22,"role":23},"Chiara Marini-Bettolo, MD, PhD","John Walton Muscular Dystrophy Research Centre","PRINCIPAL_INVESTIGATOR",[25,30],{"name":26,"role":27,"phone":28,"phoneExt":10,"email":29},"Registry Project Manager and Curator","CONTACT","0191 2418640","helen.walker2@newcastle.ac.uk",{"name":31,"role":27,"phone":10,"phoneExt":10,"email":32},"Registries Team","registries@ncl.ac.uk",[34],{"facility":22,"status":35,"city":36,"state":10,"zip":37,"country":38,"countryCode":39,"cosmosGeoPoint":40,"geoPoint":45,"contacts":46},"RECRUITING","Newcastle upon Tyne","NE1 3BZ","United Kingdom","UK",{"type":41,"coordinates":42},"Point",[43,44],-1.61396,54.97328,{"lat":44,"lon":43},[47,49],{"name":26,"role":27,"phone":28,"phoneExt":10,"email":48},"fshdregistry@newcastle.ac.uk",{"name":21,"role":23,"phone":10,"phoneExt":10,"email":10},{"type":51,"investigatorFullName":10,"investigatorTitle":10,"investigatorAffiliation":10,"oldNameTitle":10,"oldOrganization":10},"SPONSOR","100362621","the-united-kingdom-facioscapulohumeral-muscular-dystrophy-patient-registry-100362621",false,"NCT04001582","The United Kingdom Facioscapulohumeral Muscular Dystrophy Patient Registry","The UK Facioscapulohumeral Muscular Dystrophy Patient Registry","Inclusion Criteria:\n\n\\- All patients with a confirmed FSHD diagnosis (or pending diagnosis) who reside in the UK are eligible for inclusion.\n\nExclusion Criteria:\n\n* Any confirmed NMD other than FSHD\n* Living outside of the UK","ALL",{"count":61,"type":62},1018,"ESTIMATED","99 Years","OBSERVATIONAL","Facioscapulohumeral Dystrophy (FSHD) is the third most common form of neuromuscular dystrophy worldwide with an estimated prevalence of one in 20,000. FSHD is an autosomal dominant genetic disease and is estimated to affect up to 3,000 people in the UK.\n\nThe patient registry facilitates a questionnaire based research study to better characterise and understand the disease in the UK, and helps to identify potential participants eligible for clinical trials.",[67],"Facioscapulohumeral Muscular Dystrophy",[69,67,70,71,72],"FSHD","Facioscapulohumeral Muscular Dystrophy Type 1","Facioscapulohumeral Muscular Dystrophy Type 2","Muscular Dystrophy","2024-05-07",{"date":75,"type":76},"2024-05-09","ACTUAL",{"date":78,"type":76},"2013-05",{"date":80,"type":62},"2040-01",{"name":5,"class":6},1]