[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100624400":3},{"organization":4,"armGroups":7,"interventions":8,"overallOfficials":12,"centralContacts":16,"locations":23,"responsibleParty":40,"collaborators":7,"id":43,"slug":44,"hasResults":45,"nctId":46,"briefTitle":47,"officialTitle":47,"acronym":7,"eligibilityCriteria":48,"healthyVolunteers":45,"sex":49,"minAge":50,"maxAge":7,"enrollmentInfo":51,"targetDuration":54,"studyType":55,"phases":7,"briefSummary":56,"conditions":57,"keywords":69,"overallStatus":25,"whyStopped":7,"lastUpdateSubmitDate":73,"lastUpdatePostDateStruct":74,"startDateStruct":77,"completionDateStruct":79,"leadSponsor":81,"locationsCount":82},{"fullName":5,"class":6},"FSHD Society","OTHER",null,[9],{"type":6,"name":10,"description":11,"armGroupLabels":7,"otherNames":7},"Observational","Observational study",[13],{"name":14,"affiliation":5,"role":15},"Amanda Hill, MBA","PRINCIPAL_INVESTIGATOR",[17],{"name":18,"role":19,"phone":20,"phoneExt":21,"email":22},"Kayleigh Worek, MS","CONTACT","781-301-6060","2900","betterlife@fshdsociety.org",[24],{"facility":5,"status":25,"city":26,"state":27,"zip":28,"country":29,"countryCode":30,"cosmosGeoPoint":31,"geoPoint":36,"contacts":37},"RECRUITING","Randolph","Massachusetts","02368","United States","US",{"type":32,"coordinates":33},"Point",[34,35],-71.04116,42.1626,{"lat":35,"lon":34},[38],{"name":39,"role":19,"phone":20,"phoneExt":21,"email":22},"Kayleigh Worek, Program Manager, MS",{"type":15,"investigatorFullName":41,"investigatorTitle":42,"investigatorAffiliation":5,"oldNameTitle":7,"oldOrganization":7},"Amanda Hill","Senior Director of Research","100624400","betterlife-fshd-a-patient-driven-health-and-research-platform-100624400",false,"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","ALL","1 Year",{"count":52,"type":53},5000,"ESTIMATED","100 Years","OBSERVATIONAL","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",[58,59,60,61,62,63,64,65,66,67,68],"FSH","FSH Muscular Dystrophy","FSHD - Facioscapulohumeral Muscular Dystrophy","FSHD1","FSHD","FSHD2","Facioscapulohumeral Muscular Dystrophy","Facioscapulohumeral Muscular Dystrophy 1","Facioscapulohumeral Muscular Dystrophy 2","Facioscapulohumeral Muscular Dystrophy (FSHD)","Muscular Dystrophy, Facioscapulohumeral",[62,70,59,61,63,71,72],"Registry","Facioscapulohumeral dystrophy","facioscapulohumeral muscular dystrophy","2026-02-19",{"date":75,"type":76},"2026-02-20","ACTUAL",{"date":78,"type":76},"2024-08-02",{"date":80,"type":53},"2060-01",{"name":5,"class":6},1]