[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"pediatric-diseases\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:pediatric-diseases":29},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,1,0,[8],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":18,"enrollmentInfo":19,"targetDuration":4,"studyType":22,"phases":23,"briefSummary":25,"conditions":26,"keywords":31,"overallStatus":40,"whyStopped":4,"lastUpdateSubmitDate":41,"lastUpdatePostDateStruct":42,"startDateStruct":45,"completionDateStruct":47,"leadSponsor":49,"locationsCount":52},"100572152","education--care-in-rare-efficacy-of-targeted-psychoeducational-intervention-among-pediatric-rare-disease-patients-100572152",false,"NCT06729554","Education & Care in RARE: Efficacy of Targeted Psychoeducational Intervention Among Pediatric Rare Disease Patients","Education & Care in RARE - Efficacy of Targeted Psychoeducational Intervention to Improve Knowledge About Rare Diseases and to Promote Mental Health Among Pediatric Rare Disease Patients","Inclusion Criteria:\n\n* Children and adolescents with a confirmed diagnosis of a rare disease with\n* Age 5-20 years, corresponding to a developmental age of 5-18 years\n* Existing medical care at a participating study center because of the rare disease\n* Voluntary participation and informed consent\n* Ability to complete the questionnaires\n* Ability to actively participate the intervention (psychoeducation)\n\nExclusion Criteria:\n\n* Moderate or severe cognitive impairment\n* Simultaneous admission of the child \u002F adolescent to a setting with high-frequency psychotherapeutic intervention (e.g. admission to psychosomatic medicine, child and adolescent psychiatry)\n* No informed consent\n* Language barrier of the child \u002F adolescent\n* Assumption that compliance is too low to attend all study appointments","ALL","5 Years","20 Years",{"count":20,"type":21},100,"ESTIMATED","INTERVENTIONAL",[24],"NA","\"Rare Diseases\" is an umbrella term including more than 8.000 different diseases which individually affect only a small percentage of people. Rare diseases predominantly affect children and adolescents and are associated with high medical and psychosocial burden of disease.\n\nThe investigators invented Education \\& Care in RARE - a short-term, structured, resource-oriented and child-friendly psychoeducation program for children and adolescents with rare diseases.\n\nThis study is a prospective, multicenter, randomized and controlled study with a waiting list. Aim of the study is to investigate the efficacy of Education \\& Care in RARE on knowledge about rare diseases and on mental health well-being in pediatric rare disease patients, compared to a control group.\n\nIn this study participants are randomized in an intervention group and a waiting list control group. Both study groups thus receive the psychoeducation with Education \\& Care in RARE and complete the identical questionnaires. Compared to the Intervention group, the waiting list control group receives the intervention with a time delay (8-12 weeks later) and has one additional appointment for questionnaire evaluation before start of the psychoeducation.",[27,28,29,30],"Orphan Diseases","Rare Disorders","Pediatric Diseases","Inborn Errors of Metabolism Disorders",[32,33,34,35,36,37,38,39],"Rare diseases","ultra-rare diseases","psychoeducation in pediatrics","psychoeducation for alle rare diseases","rare pediatric diseases","orphan diseases psychoeducation","rare disease burden","waiting list control study","RECRUITING","2025-05-12",{"date":43,"type":44},"2025-05-13","ACTUAL",{"date":46,"type":44},"2024-12-15",{"date":48,"type":21},"2027-12-01",{"name":50,"class":51},"Medical University of Vienna","OTHER",7]