[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"disorder-neurologic\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:disorder-neurologic":23},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,2,0,[8,44],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":13,"acronym":4,"eligibilityCriteria":14,"healthyVolunteers":11,"sex":15,"minAge":4,"maxAge":4,"enrollmentInfo":16,"targetDuration":4,"studyType":19,"phases":4,"briefSummary":20,"conditions":21,"keywords":24,"overallStatus":31,"whyStopped":4,"lastUpdateSubmitDate":32,"lastUpdatePostDateStruct":33,"startDateStruct":36,"completionDateStruct":38,"leadSponsor":40,"locationsCount":43},"100053322","stakeholders-of-rare-diseases-informing-values-in-neuroethics-100053322",false,"NCT07314736","Stakeholders of Rare Diseases Informing Values In Neuroethics","Inclusion Criteria:\n\nGroup 1 (Parental Caregiver and Patient Participants)\n\n* Parental\u002Fprimary caregiver with a child who has a genetic diagnosis of an ultrarare disorder with pediatric onset, or a clinical diagnosis with a suspected genetic etiology.\n* Child is under 21 years of age at the time of enrollment.\n* Child has an expected survival of at least one year following study enrollment.\n* Patients (age ≤ 25 years) with a genetic diagnosis of an ultrarare disorder with pediatric onset, or clinical diagnosis with suspected genetic etiology.\n* Willingness to provide verbal informed consent (or assent, as appropriate) to participate\n\nGroup 2 (Other Family)\n\n* Family member of a Group 1 participant who plays an active role in the child's life or care.\n* Includes siblings (≥ 13 years of age), grandparents, or other non-primary caregivers directly affected by the child's diagnosis.\n* Demonstrated familiarity with the child's medical and family experience.\n* Willingness to provide verbal informed consent (or assent, as appropriate) to participate.\n\nGroup 3 (Non-Family Stakeholders)\n\n* Individuals currently engaged, or recently active, in clinical care, research, advocacy or policy work related to pediatric-onset rare genetic disorders.\n* May include clinicians (e.g., neurologists, genetic counselors, nurses, child-life specialists, home-health staff), members of patient-advocacy organizations, institutional-review-board (IRB) members, payers, sponsors, funders, or representatives of hospital systems or regulatory agencies.\n* Willingness to provide verbal informed consent to participate in semi-structured interviews or focus groups\n\nExclusion Criteria:\n\n* Limited English proficiency\n* Unable to complete the survey materials or complete the interviews in English.\n* Inability or unwillingness of research participant to give verbal informed consent (in English)\n* Condition or chronic illness, which in the opinion of the PI\u002FCo-I, makes participation unsafe or untenable (i.e., cognitive impairment, concurrent acute morbidity).","ALL",{"count":17,"type":18},385,"ESTIMATED","OBSERVATIONAL","The purpose of this research study is to learn more about the perspectives of key stakeholders-patients, families, healthcare providers, and researchers-on the ethical challenges of small-scale, personalized treatment trials for rare neurological diseases (RND).",[22,23],"Rare Disorder","Disorder, Neurologic",[25,26,27,28,29,30],"Rare Neurological Disorders (RND)","Stakeholders","Patient Participant","Caregiver","Other Family","Non-Family Stakeholder","RECRUITING","2026-07-10",{"date":34,"type":35},"2026-07-13","ACTUAL",{"date":37,"type":35},"2026-07-08",{"date":39,"type":18},"2031-01",{"name":41,"class":42},"St. Jude Children's Research Hospital","OTHER",1,{"id":45,"slug":4,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":13,"acronym":4,"eligibilityCriteria":14,"healthyVolunteers":11,"sex":15,"minAge":4,"maxAge":4,"enrollmentInfo":46,"targetDuration":4,"studyType":19,"phases":4,"briefSummary":20,"conditions":47,"keywords":48,"overallStatus":31,"whyStopped":4,"lastUpdateSubmitDate":49,"lastUpdatePostDateStruct":50,"startDateStruct":52,"completionDateStruct":54,"leadSponsor":55,"locationsCount":43},"100617139",{"count":17,"type":18},[22,23],[25,26,27,28,29,30],"2026-06-24",{"date":51,"type":35},"2026-06-25",{"date":53,"type":18},"2026-07",{"date":39,"type":18},{"name":41,"class":42}]