[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"leadSponsorName\":\"German Center for Neurodegenerative Diseases (DZNE)\",\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:":78},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,45],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":13,"acronym":14,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":4,"enrollmentInfo":18,"targetDuration":4,"studyType":21,"phases":4,"briefSummary":22,"conditions":23,"keywords":25,"overallStatus":32,"whyStopped":4,"lastUpdateSubmitDate":33,"lastUpdatePostDateStruct":34,"startDateStruct":37,"completionDateStruct":39,"leadSponsor":41,"locationsCount":44},"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":19,"type":20},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.",[24],"Friedreich Ataxia",[26,27,28,29,30,31],"health-related quality of life","economic evaluation","psychosocial health","mobile-health app","Friedreich's Ataxia","Ambulatory assessment","RECRUITING","2026-03-31",{"date":35,"type":36},"2026-04-01","ACTUAL",{"date":38,"type":36},"2023-06-01",{"date":40,"type":20},"2028-12-31",{"name":42,"class":43},"German Center for Neurodegenerative Diseases (DZNE)","OTHER",6,{"id":46,"slug":47,"hasResults":11,"nctId":48,"briefTitle":49,"officialTitle":50,"acronym":51,"eligibilityCriteria":52,"healthyVolunteers":11,"sex":16,"minAge":4,"maxAge":4,"enrollmentInfo":53,"targetDuration":4,"studyType":55,"phases":56,"briefSummary":58,"conditions":59,"keywords":63,"overallStatus":68,"whyStopped":4,"lastUpdateSubmitDate":69,"lastUpdatePostDateStruct":70,"startDateStruct":72,"completionDateStruct":74,"leadSponsor":76,"locationsCount":77},"100612246","dyadic-app-supported-collaborative-care-intervention-trial-for-family-caregivers-of-people-living-with-dementia-100612246","NCT07251088","Dyadic, App-supported Collaborative Care Intervention Trial for Family Caregivers of People Living With Dementia","Dyadic, App-supported Collaborative Care Intervention Trial for Family Caregivers of People Living With Dementia - The Multi-center Living@Home Study","Living@Home","Inclusion Criteria:\n\n* formal dementia diagnosis\n* living in their own home for the person with dementia\n* access to a smartphone and internet for the informal caregiver\n* informed consent of the participant\n\nExclusion Criteria:\n\n* not able to provide written consent\n* if a legal representative is present, they may give their consent",{"count":54,"type":20},554,"INTERVENTIONAL",[57],"NA","In Germany, approximately 1.8 million individuals are living with dementia, representing a considerable share of those requiring long-term care. Many people with dementia (PlwD) express the desire to remain in their home environment for as long as possible. However, the progressive cognitive and physical decline associated with the disease renders caregiving increasingly time-intensive and places a substantial burden on family members. In the absence of sufficient support structures, maintaining home-based care becomes difficult, creating additional strain on the health care system.\n\nThe study aims to address these challenges through an innovative intervention. Its primary objectives are: (1) to evaluate whether a dyadic care management model, delivered by specialized nurses with expertise in dementia care and supported by a mobile health application that provides direct access to caregiving experts and memory clinics, can help stabilize the home care situation; (2) to determine whether this approach reduces caregiver burden; and (3) to assess its effectiveness in alleviating neuropsychiatric symptoms in PlwD, compared to usual care.",[60,61,62],"Dementia","Nurse Care Coordination","Informal Caregiver",[60,64,65,66,67],"Dementia Care","Caregiver of people with dementia","Dyade","digital health intervention","NOT_YET_RECRUITING","2025-11-18",{"date":71,"type":36},"2025-11-26",{"date":73,"type":20},"2026-01-01",{"date":75,"type":20},"2028-12",{"name":42,"class":43},12,""]