[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"children-with-medical-complexity-cmc\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:children-with-medical-complexity-cmc":26},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,5,0,[8,40,70,103,126],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":4,"eligibilityCriteria":15,"healthyVolunteers":11,"sex":16,"minAge":17,"maxAge":4,"enrollmentInfo":18,"targetDuration":4,"studyType":21,"phases":22,"briefSummary":24,"conditions":25,"keywords":4,"overallStatus":28,"whyStopped":4,"lastUpdateSubmitDate":29,"lastUpdatePostDateStruct":30,"startDateStruct":33,"completionDateStruct":35,"leadSponsor":37,"locationsCount":4},"100652444","phase-2-legacy-photo-narrative-study-100652444",false,"NCT07774663","Legacy Photo-narrative Study","Photo-narratives as a Legacy Intervention for Children With Medical Complexity and Their Families","Inclusion Criteria:\n\n* has a child who receives care at one of the study sites for a complex medical condition and is followed by the complex care and\u002For palliative care team\n* has a child who is ages 3 months through 25 years old\n* has a child who has previously been home\u002Fdischarged\n* has a child whose life expectancy of \\>6 months\n\nExclusion Criteria:\n\n* are not the child's identified parent\u002Flegally authorized representative\n* has a preferred language of care other than English or Spanish\n* has an active psychiatric or chronic health concerns that preclude research participation\n* has active child protective services involvement","ALL","3 Months",{"count":19,"type":20},40,"ESTIMATED","INTERVENTIONAL",[23],"PHASE2","Children with medical complexity (CMC) live full meaningful lives that are often short. CMC and their families experience substantial distress, poor mental health, and low emotional well-being. Existing research and our prior studies suggest that legacy, defined as the summation of qualities and experiences that form the child's enduring presence, can be a resource for actionable appraisal of and coping with stressful life experiences. Photo-narratives are a novel intervention that facilitate family sharing of images to tell stories about everyday experiences related to their child's quality-of-life and personhood. In our prior studies, families reported that photo-narratives were a simple, easy way to meaningfully connect and had the potential to be an important part of their child's legacy. What remains poorly understood, however, is how photo-narratives might impact family-centered outcomes. This study aims to and evaluate the feasibility, acceptability, and potential impact of photo-narratives in a pilot randomized controlled trial.",[26,27],"Children With Medical Complexity (CMC)","Family Caregivers","NOT_YET_RECRUITING","2026-08-17",{"date":31,"type":32},"2026-08-19","ACTUAL",{"date":34,"type":20},"2027-06-01",{"date":36,"type":20},"2028-06-15",{"name":38,"class":39},"Seattle Children's Hospital","OTHER",{"id":41,"slug":42,"hasResults":11,"nctId":43,"briefTitle":44,"officialTitle":45,"acronym":4,"eligibilityCriteria":46,"healthyVolunteers":11,"sex":16,"minAge":47,"maxAge":48,"enrollmentInfo":49,"targetDuration":4,"studyType":21,"phases":51,"briefSummary":53,"conditions":54,"keywords":57,"overallStatus":28,"whyStopped":4,"lastUpdateSubmitDate":61,"lastUpdatePostDateStruct":62,"startDateStruct":64,"completionDateStruct":66,"leadSponsor":68,"locationsCount":4},"100651112","sibling-caregiver-cmc-pilot-study-100651112","NCT07756502","Sibling Caregiver CMC Pilot Study","Caring for the Mental Health of Sibling Caregivers of Children With Medical Complexity: a Pilot Study","Inclusion Criteria:\n\n* Have a sibling with medical complexity followed by the SickKids Complex Care program\n* Age 10 to 17 (inclusive)\n* Capable of completing the study measures independently or with the help of translation services\n\nExclusion Criteria:\n\n\\- Siblings who do not meet the three inclusion criteria","10 Years","17 Years",{"count":50,"type":20},63,[52],"NA","Children with medical complexity require intense caregiving from their parents and other health care providers, such as family doctors and medical specialists. These children have complex and lifelong medical conditions, and can be dependent on technology to help them breathe, move, or eat. From a young age, siblings of children with medical complexity typically assume caregiving roles to support their families. Caregiving may be associated with increased depression and anxiety in siblings, disruptions in routine, parental neglect, and constant changes. There is a gap in research on, and supports for, the mental health of these siblings.\n\nThe goal of this study is to understand how to best support the mental health of siblings of children with medical complexity. A new model of support that involves measuring mental health symptoms in siblings age 10-17 through surveys and a mental health assessment conducted by social workers was created. Siblings who need support can be referred to social work and child psychiatry services that are integrated in the health care team the family already has a relationship with. By using screening and built-in supports, the investigators hope to create a pathway for siblings that is easy to access and proactive.\n\nSocial workers can provide talk therapy to help siblings manage difficult emotions. Psychiatrists can provide a medical diagnosis if the sibling meets the criteria for an illness such as depression or anxiety. Psychiatrists can also recommend medications or resources to help siblings manage symptoms.\n\nThis is a pilot study, meaning the investigators are exploring a new model and would like to gather more information on whether it is realistic to run this model, whether siblings will use it, and to gather information on sibling mental health patterns. The investigators will also be interviewing siblings so they can share their experiences with caregiving and any challenges with mental health support. Findings from this study can inform a larger, more robust study to measure how effective the model is compared to normal care.\n\nWhile sibling research is new, the investigators have already conducted a similar study where this model was tested on parents of children with medical complexity. The investigators found parents used the model and were linked to supports quickly.",[26,55,56],"Siblings","Mental Health",[58,59,60],"children with medical complexity","siblings","mental health","2026-08-10",{"date":63,"type":32},"2026-08-12",{"date":65,"type":20},"2026-09-01",{"date":67,"type":20},"2028-09-01",{"name":69,"class":39},"The Hospital for Sick Children",{"id":71,"slug":72,"hasResults":11,"nctId":73,"briefTitle":74,"officialTitle":75,"acronym":4,"eligibilityCriteria":76,"healthyVolunteers":11,"sex":16,"minAge":77,"maxAge":4,"enrollmentInfo":78,"targetDuration":4,"studyType":21,"phases":80,"briefSummary":81,"conditions":82,"keywords":88,"overallStatus":93,"whyStopped":4,"lastUpdateSubmitDate":94,"lastUpdatePostDateStruct":95,"startDateStruct":96,"completionDateStruct":98,"leadSponsor":100,"locationsCount":102},"100605853","developing-an-innovative-decision-support-tool-for-pediatric-neuromuscular-scoliosis-100605853","NCT07167927","Developing an Innovative Decision Support Tool for Pediatric Neuromuscular Scoliosis","Developing an Innovative Decision Support Tool for Pediatric Neuromuscular Scoliosis - Aims 2 and 3","Inclusion criteria:\n\n* Parent-child dyads of children with neuromuscular scoliosis who speak English and Spanish.\n* Child is between ages 8-21 years of age and they are coming into the pediatric orthopaedic surgery clinic for consultation about potential surgery for NMS.\n* NMS is defined as having neurologic impairment (NI) and scoliosis using relevant ICD-9 or ICD-10 codes from Feudtner, et al. 2014 or Berry, et al. 2012. or a qualifying diagnosis per the Pediatric Spine Study Group definition of NMS.\n* All pediatric orthopaedic surgeons and neurosurgeons who treat neuromuscular scoliosis at our study sites will be eligible participants.\n\nExclusion criteria:\n\n* Families whose child with NMS is less than 8 years of age at time of orthopaedic consultation because surgery at a younger age usually indicates an atypical case.\n* Children with the diagnosis of Becker's muscular dystrophy due to potential disease modifying therapies that may alter curve progression.","8 Years",{"count":79,"type":20},110,[52],"The goal of this pilot hybrid type I efficacy\u002Fimplementation trial is to assess a newly developed decision support tool patients, parents, and providers to use during surgical treatment decision making for neuromuscular scoliosis (NMS). Results from this pilot will inform the design of a future larger effectiveness trial of the decision support tool.\n\nParticipants will either receive usual care or receive the decision support tool. Researchers will assess the decision made, decision quality, individual affective, cognitive, and behavioral effects, and feasibility and acceptability of tool use. They will also collect potential barriers and facilitators to implementation and feedback about the tool and study design to maximize likelihood of successful deployment of the tool into clinical practice and inform the design of a future trial. The outcomes measures will be used to inform potential effect size estimates to inform a future trial.",[26,83,84,85,86,87],"Multiple Chronic Conditions","Neuromuscular Scoliosis","Shared Decision Making","Decision Support Systems, Clinical","Decision Aids",[58,89,90,91,92],"shared decision making","values clarification","uncertainty communication","decision support tool","RECRUITING","2026-08-06",{"date":61,"type":32},{"date":97,"type":32},"2025-10-21",{"date":99,"type":20},"2027-03-31",{"name":101,"class":39},"University of Utah",2,{"id":104,"slug":105,"hasResults":11,"nctId":106,"briefTitle":107,"officialTitle":107,"acronym":4,"eligibilityCriteria":108,"healthyVolunteers":109,"sex":16,"minAge":110,"maxAge":4,"enrollmentInfo":111,"targetDuration":4,"studyType":21,"phases":113,"briefSummary":114,"conditions":115,"keywords":4,"overallStatus":93,"whyStopped":4,"lastUpdateSubmitDate":116,"lastUpdatePostDateStruct":117,"startDateStruct":119,"completionDateStruct":121,"leadSponsor":123,"locationsCount":125},"100429078","a-multi-phase-study-examining-hospital-to-home-transitions-for-children-with-medical-complexity-100429078","NCT04867395","A Multi-Phase Study Examining Hospital to Home Transitions for Children With Medical Complexity","Inclusion Criteria:\n\nParents\n\n* English or Spanish-speaking\n* Parent or legal guardian and primary caregiver of child who has medical complexity (defined by significant chronic conditions in ≥2 body systems, progressive conditions associated with decreased life expectancy, dependence on technology for \\>6 months \\[e.g., respiratory equipment, central lines, feeding tubes\\], or progressive\u002Fmetastatic malignancies) who was admitted to the acute or intensive care units\n* The individual's child is ≤18 years old\n* The individual's child was discharged home or is expected be discharged home on ≥1 daily medication.\n* Willingness to be randomized to intervention group\n* Willingness and ability to participate in study procedures\n\nExclusion Criteria:\n\nParents\n\n* Caregiver \\\u003C18 years old\n* Poor visual acuity (\\\u003C20\u002F50 corrected on Rosenbaum screener for in-person recruitment; by subject report for phone recruitment)\n* Self-reported hearing difficulty\n* Previously enrolled.",true,"18 Years",{"count":112,"type":20},282,[52],"The overarching objective of this study is to make it easier for parents of children with medical complexity (CMC) to take care of their children after discharge home from the hospital and reduce the chance of post-hospitalization morbidity (meaning bad outcomes such as readmissions) after discharge. CMC, or those with multiple chronic conditions, progressive conditions, or technology dependence, are at high risk for post-hospitalization morbidity.",[26],"2026-07-15",{"date":118,"type":32},"2026-07-16",{"date":120,"type":32},"2021-07-23",{"date":122,"type":20},"2027-09-30",{"name":124,"class":39},"NYU Langone Health",1,{"id":127,"slug":128,"hasResults":11,"nctId":129,"briefTitle":130,"officialTitle":131,"acronym":4,"eligibilityCriteria":132,"healthyVolunteers":11,"sex":16,"minAge":133,"maxAge":134,"enrollmentInfo":135,"targetDuration":4,"studyType":21,"phases":137,"briefSummary":138,"conditions":139,"keywords":144,"overallStatus":28,"whyStopped":4,"lastUpdateSubmitDate":146,"lastUpdatePostDateStruct":147,"startDateStruct":149,"completionDateStruct":151,"leadSponsor":153,"locationsCount":125},"100641485","nurse-led-integrated-home-service-to-support-parents-in-symptom-management-for-children-requiring-respiratory-support-100641485","NCT07652268","Nurse-led Integrated Home Service to Support Parents in Symptom Management for Children Requiring Respiratory Support","Nurse-led Integrated Home Health Service to Support Parents in Symptom Management for Children With Respiratory Support: an Effectiveness-implementation Hybrid 2 Study","Inclusion Criteria:\n\n1. parent of a child with respiratory support aged 6-month to 22 years old\n2. having a Smartphone\n3. able to communicate in Chinese or in English\n4. living with his\u002Fher child at home.\n\nExclusion Criteria:\n\n1. a reported mental health disorder\n2. engaging in other structured programs related to symptom management\n3. living in an area with no internet coverage","6 Months","22 Years",{"count":136,"type":20},80,[52],"The aims of this study are to test the effectiveness of a nurse-led integrated home health service to enhance parental self-efficacy in symptom management for children requiring respiratory support, and alongside identify factors facilitating or deterring the program implementation.\n\nA single group pre-post quasi-experimental study on parents of CMC requiring respiratory support.\n\nParents will be recruited from non-government organizations, with an estimated sample size of 80 parents. Self-administrated questionnaire, and semi-structured interview guide will be used for data collection.",[26,140,141,142,143],"Symptom Management","Nurse-led Supportive Care","Self Efficacy","Home Care Services",[145],"Children requiring respiratory support","2026-06-16",{"date":148,"type":32},"2026-06-18",{"date":150,"type":20},"2026-07-27",{"date":152,"type":20},"2029-06-30",{"name":154,"class":39},"Dr Winsome Lam"]