[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100511712":3},{"organization":4,"armGroups":7,"interventions":7,"overallOfficials":8,"centralContacts":13,"locations":22,"responsibleParty":114,"collaborators":116,"id":121,"slug":122,"hasResults":123,"nctId":124,"briefTitle":125,"officialTitle":125,"acronym":126,"eligibilityCriteria":127,"healthyVolunteers":123,"sex":128,"minAge":129,"maxAge":7,"enrollmentInfo":130,"targetDuration":7,"studyType":133,"phases":7,"briefSummary":134,"conditions":135,"keywords":137,"overallStatus":25,"whyStopped":7,"lastUpdateSubmitDate":144,"lastUpdatePostDateStruct":145,"startDateStruct":148,"completionDateStruct":150,"leadSponsor":152,"locationsCount":153},{"fullName":5,"class":6},"German Center for Neurodegenerative Diseases (DZNE)","OTHER",null,[9],{"name":10,"affiliation":11,"role":12},"Bernhard Michalowsky, PD Dr.","German Center for Neurodegenerative Diseases (DZNE) Rostock\u002F Greifswald, 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Diseases (DZNE)","Bonn","53127",{"type":31,"coordinates":80},[81,82],7.09549,50.73438,{"lat":82,"lon":81},[85,88,91],{"name":86,"role":15,"phone":7,"phoneExt":7,"email":87},"Thomas Klockgether, Prof. Dr.","klockgether@uni-bonn.de",{"name":89,"role":15,"phone":7,"phoneExt":7,"email":90},"Marcus Grobe-Einsler, Dr.","marcus.grobe-einsler@dzne.de",{"name":89,"role":12,"phone":7,"phoneExt":7,"email":7},{"facility":93,"status":25,"city":94,"state":7,"zip":95,"country":64,"countryCode":65,"cosmosGeoPoint":7,"geoPoint":7,"contacts":96},"Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik","Münich","80336",[97],{"name":98,"role":15,"phone":7,"phoneExt":7,"email":99},"Thomas Klopstock, Prof. Dr.","Thomas.Klockgether@ukbonn.de",{"facility":101,"status":102,"city":103,"state":7,"zip":104,"country":64,"countryCode":65,"cosmosGeoPoint":105,"geoPoint":109,"contacts":110},"Neurologische Klinik und Hertie-Institut für Klinische Hirnforschung, Universitätsklinik Tübingen","NOT_YET_RECRUITING","Tübingen","72076",{"type":31,"coordinates":106},[107,108],9.05222,48.52266,{"lat":108,"lon":107},[111],{"name":112,"role":15,"phone":7,"phoneExt":7,"email":113},"Ludger Schöls, Prof. Dr.","Ludger.Schoels@uni-tuebingen.de",{"type":115,"investigatorFullName":7,"investigatorTitle":7,"investigatorAffiliation":7,"oldNameTitle":7,"oldOrganization":7},"SPONSOR",[117,119],{"name":118,"class":6},"McMaster University",{"name":120,"class":6},"Sorbonne University","100511712","patient-reported-health-economic-and-psychosocial-outcomes-in-friedreich-ataxia-100511712",false,"NCT05943002","Patient-reported, Health Economic and Psychosocial Outcomes in Friedreich Ataxia","PROFA","Inclusion Criteria:\n\n* FA confirmed by molecular genetic testing\n* Ataxia severity of ≤30 points according to the Scale of the Assessment and Rating of Ataxia (SARA)\n* Access to a smartphone or tablet and able to operate the device\n* Older than 12 years\n\nExclusion Criteria:\n\n* Lack of ability to give consent\n* Ataxia severity \\>30 according to the Scale of the Assessment and Rating of Ataxia (SARA)","ALL","12 Years",{"count":131,"type":132},200,"ESTIMATED","OBSERVATIONAL","The PROFA study is an international, multi-centric observational and validation study to assess the patient-reported, psychosocial and economic outcomes of patients with Friedreich Ataxia (FA). Eligible patients will be recruited from six study centers in Germany, Austria and France. Patients will complete a baseline assessment via face-to-face interviews at the study centers and multiple momentary follow-up assessments via a mobile-health app at home daily to monthly for six months. Study results will gain essential and in-depth insights into the daily life of patients with FA.",[136],"Friedreich Ataxia",[138,139,140,141,142,143],"health-related quality of life","economic evaluation","psychosocial health","mobile-health app","Friedreich's Ataxia","Ambulatory assessment","2026-03-31",{"date":146,"type":147},"2026-04-01","ACTUAL",{"date":149,"type":147},"2023-06-01",{"date":151,"type":132},"2028-12-31",{"name":5,"class":6},6]