[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-study-detail:100619769":3},{"organization":4,"armGroups":7,"interventions":10,"overallOfficials":15,"centralContacts":19,"locations":28,"responsibleParty":44,"collaborators":10,"id":47,"slug":48,"hasResults":49,"nctId":50,"briefTitle":51,"officialTitle":52,"acronym":10,"eligibilityCriteria":53,"healthyVolunteers":54,"sex":55,"minAge":56,"maxAge":57,"enrollmentInfo":58,"targetDuration":10,"studyType":61,"phases":10,"briefSummary":62,"conditions":63,"keywords":67,"overallStatus":31,"whyStopped":10,"lastUpdateSubmitDate":71,"lastUpdatePostDateStruct":72,"startDateStruct":75,"completionDateStruct":77,"leadSponsor":79,"locationsCount":80},{"fullName":5,"class":6},"Bahçeşehir University","OTHER",[8,12],{"label":9,"type":10,"description":11,"interventionNames":10},"Lower Functional Independence",null,"Children with rare genetic disorders whose functional independence level is lower based on the Pediatric Functional Independence Measure (WeeFIM). Caregivers of these children are included in the study.",{"label":13,"type":10,"description":14,"interventionNames":10},"Higher Functional Independence","Children with rare genetic disorders whose functional independence level is higher based on the Pediatric Functional Independence Measure (WeeFIM). Caregivers of these children are included in the study.",[16],{"name":17,"affiliation":5,"role":18},"Tuğçe Tahmaz, PhD","PRINCIPAL_INVESTIGATOR",[20,25],{"name":21,"role":22,"phone":23,"phoneExt":10,"email":24},"Yağmur Erkan, PT","CONTACT","+90 506 940 0759","yagmurerkn@gmail.com",{"name":17,"role":22,"phone":26,"phoneExt":10,"email":27},"+905330397791","tugcetahmaz@msn.com",[29],{"facility":30,"status":31,"city":32,"state":10,"zip":33,"country":34,"countryCode":10,"cosmosGeoPoint":35,"geoPoint":40,"contacts":41},"Bahcesehir University","RECRUITING","Istanbul","34053","Turkey (Türkiye)",{"type":36,"coordinates":37},"Point",[38,39],28.94966,41.01384,{"lat":39,"lon":38},[42,43],{"name":21,"role":22,"phone":10,"phoneExt":10,"email":10},{"name":17,"role":22,"phone":26,"phoneExt":10,"email":27},{"type":18,"investigatorFullName":45,"investigatorTitle":46,"investigatorAffiliation":5,"oldNameTitle":10,"oldOrganization":10},"Yağmur Erkan","Graduate Student Researcher","100619769","the-relationship-between-functional-independence-and-family-well-being-in-children-with-rare-genetic-disorders-100619769",false,"NCT07348926","The Relationship Between Functional Independence and Family Well-being in Children With Rare Genetic Disorders","Examination of Families' Psychological Status and Quality of Life According to the Functional Independence Status of Children With Rare Genetic Diseases in Early Childhood","Inclusion Criteria:\n\n* Caregivers of children aged 0-4 years diagnosed with a rare genetic disorder.\n* The child must have been receiving physiotherapy for at least 6 months.\n* Caregivers who voluntarily agree to participate and provide informed consent.\n* Caregivers who are able to read and understand Turkish to complete the questionnaires.\n\nExclusion Criteria:\n\n* Caregivers who have cognitive or language limitations that prevent them from completing the questionnaires.\n* Caregivers who decline participation or submit incomplete questionnaire forms.\n* Children or caregivers with an additional medical or neurological condition that prevents participation in the study.",true,"ALL","18 Years","65 Years",{"count":59,"type":60},45,"ESTIMATED","OBSERVATIONAL","This study aims to examine the psychological status and quality of life of families with children who have rare genetic disorders. The focus of the study is to understand how the child's level of functional independence relates to the well-being of the family. Functional independence will be assessed using standardized tools, and parental psychological status and quality of life will be evaluated with validated questionnaires.\n\nThe information gathered from this study may help improve the understanding of how rare genetic disorders affect family dynamics and daily functioning. The results may guide health care professionals in planning family-centered physiotherapy, psychological support, and care programs.",[64,65,66],"Rare Genetic Disorders","Quality of Life","Functional Impairment",[64,68,69,65,70],"physical therapy","Depression","Family","2026-01-10",{"date":73,"type":74},"2026-01-16","ACTUAL",{"date":76,"type":74},"2025-10-25",{"date":78,"type":60},"2026-03-15",{"name":5,"class":6},1]