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(DZNE)","Bonn","53127",{"type":30,"coordinates":77},[78,79],7.09549,50.73438,{"lat":79,"lon":78},[82,85,88],{"name":83,"role":15,"phone":7,"phoneExt":7,"email":84},"Thomas Klockgether, Prof. Dr.","klockgether@uni-bonn.de",{"name":86,"role":15,"phone":7,"phoneExt":7,"email":87},"Marcus Grobe-Einsler, Dr.","marcus.grobe-einsler@dzne.de",{"name":86,"role":12,"phone":7,"phoneExt":7,"email":7},{"facility":90,"status":25,"city":91,"state":7,"zip":92,"country":62,"cosmosGeoPoint":7,"geoPoint":7,"contacts":93},"Friedrich-Baur-Institut an der Neurologischen Klinik und Poliklinik","Münich","80336",[94],{"name":95,"role":15,"phone":7,"phoneExt":7,"email":96},"Thomas Klopstock, Prof. Dr.","Thomas.Klockgether@ukbonn.de",{"facility":98,"status":99,"city":100,"state":7,"zip":101,"country":62,"cosmosGeoPoint":102,"geoPoint":106,"contacts":107},"Neurologische Klinik und Hertie-Institut für Klinische Hirnforschung, Universitätsklinik Tübingen","NOT_YET_RECRUITING","Tübingen","72076",{"type":30,"coordinates":103},[104,105],9.05222,48.52266,{"lat":105,"lon":104},[108],{"name":109,"role":15,"phone":7,"phoneExt":7,"email":110},"Ludger Schöls, Prof. Dr.","Ludger.Schoels@uni-tuebingen.de",{"type":112,"investigatorFullName":7,"investigatorTitle":7,"investigatorAffiliation":7,"oldNameTitle":7,"oldOrganization":7},"SPONSOR",[114,116],{"name":115,"class":6},"McMaster University",{"name":117,"class":6},"Sorbonne University","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":127,"type":128},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.",[132],"Friedreich Ataxia",[134,135,136,137,138,139],"health-related quality of life","economic evaluation","psychosocial health","mobile-health app","Friedreich's Ataxia","Ambulatory assessment","2026-03-31",{"date":142,"type":143},"2026-04-01","ACTUAL",{"date":145,"type":143},"2023-06-01",{"date":147,"type":128},"2028-12-31",{"name":5,"class":6},6]