[{"data":1,"prerenderedAt":-1},["ShallowReactive",2],{"health-studies-list:{\"conditionNormalized\":\"intellectual-and-developmental-disabilities\",\"overallStatus\":[\"RECRUITING\",\"AVAILABLE\",\"NOT_YET_RECRUITING\"],\"orderBy\":\"LastUpdateSubmitDate:desc\",\"size\":25,\"offset\":0}":3,"health-study-condition:intellectual-and-developmental-disabilities":26},{"pageToken":4,"total":5,"offset":6,"count":5,"results":7},null,3,0,[8,42,73],{"id":9,"slug":10,"hasResults":11,"nctId":12,"briefTitle":13,"officialTitle":14,"acronym":15,"eligibilityCriteria":16,"healthyVolunteers":11,"sex":17,"minAge":4,"maxAge":4,"enrollmentInfo":18,"targetDuration":4,"studyType":21,"phases":4,"briefSummary":22,"conditions":23,"keywords":27,"overallStatus":29,"whyStopped":4,"lastUpdateSubmitDate":30,"lastUpdatePostDateStruct":31,"startDateStruct":34,"completionDateStruct":36,"leadSponsor":38,"locationsCount":41},"100640774","collaboration-for-down-syndrome-progress-cdp-100640774",false,"NCT07625579","Collaboration for Down Syndrome Progress (CDP)","The INCLUDE (INvestigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome) Project's Collaboration for Down Syndrome Progress (CDP) Program","CDP","Inclusion Criteria:\n\n* Individual with Down syndrome\n\nTo be considered potentially eligible for this CDP, a participant must meet the following criteria:\n\n* Diagnosis of Down syndrome (with the exception of control participants for the Subsample study on Imaging). We will be enrolling participants with all types of Down syndrome including standard Trisomy 21, mosaic Down syndrome, and translocations.\n* Primary language is English, Spanish, or Portuguese.\n\nSupport Person\n\n* Able to attend in-person or remote visits.\n* Able to provide accurate information about the study participant's clinical outcomes and family history.\n* Primary language is English, Spanish, or Portuguese.\n\nBiological parent(s) biospecimen collection\n\n* Biological parent of the enrolled participant.\n* Willing to provide a biological sample.\n* Primary language is English, Spanish, or Portuguese. Imaging subsample study controls\n* A subset of controls will be enrolled to match a cohort of individuals who take part in the CDP Subsample Study on imaging. Healthy control infants must be born at greater than 36 weeks gestational age and must have at least one older sibling. The sibling criterion allows comparability for potential analyses combining control data from DS-CDP with analogous control data previously collected by IBIS for other neurodevelopmental studies.\n\nExclusion Criteria:\n\n* A participant will also be excluded if a healthcare professional determines that CDP involvement poses a risk of mental and physical harm to the participant.\n\nImaging subsample study exclusion criteria for individuals with Down syndrome and controls:\n\n* Known genetic conditions or syndromes with effects on neurobehavioral development (except for Down syndrome) such as Fragile X syndrome, Williams syndrome, or Prader-Willi syndrome. We may also exclude other syndromes such as Marfan's syndrome or Turner syndrome because of overall significant multisystem effects.\n* Birth weight \\\u003C 2,000 grams or gestational age \\\u003C 34 weeks (infants with Down syndrome infants) or \\\u003C37 weeks (control subjects)\n* Significant perinatal adversity, in utero neurotoxin exposure or maternal gestational diabetes requiring medication management\n* Significant medical conditions (unrelated to Down syndrome) affecting growth, development, cognition or sensory impairments. We will conduct a review of the medical history to identify major medical conditions that might be a reason for exclusion.\n\n  * Neurological event like a stroke\n  * Congenital infection associated with altered development (e.g., congenital rubella)\n  * Significant infection affecting the brain after birth, like meningitis\n* In infants with Down syndrome, severe medical issues which may exert significant developmental effects beyond Down syndrome such as:\n\n  * Cyanotic cardiac abnormalities (e.g., Tetralogy of Fallot) that affect overall oxygen levels\n  * Frailty because of recovery from significant surgery or extended hospital stays\n* Contraindication for MRI\n* English not predominant home language\n* Family history of a first-degree relative with psychosis or bipolar disorder (controls only)\n* To be consistent with prior imaging studies from the infant brain imaging study, healthy controls will additionally be excluded for a family history of a first- or second-degree relative with ASD to also allow them to serve as a comparison group for elevated familial liability for ASD.\n\nSleep subsample study exclusion criteria:\n\n* Participants under the age of 12 who are currently being treated for obstructive sleep apnea using a positive airway pressure (PAP) device.\n* For the WatchPAT device, participants must weigh more than 65 pounds. They cannot have a permanent pacemaker or sustained non-sinus cardiac arrhythmias.","ALL",{"count":19,"type":20},1400,"ESTIMATED","OBSERVATIONAL","The Collaboration for Down Syndrome Progress (CDP) is a long-term study that follows people with Down syndrome of all ages. The goal is to better understand their health, development, and everyday experiences over time. Participants and their caregivers will answer questions, share medical information, and may give samples like blood or saliva. Some participants may also take part in optional activities such as sleep studies, movement tracking, or brain imaging. By collecting the same types of information at many sites, the CDP will help researchers learn why certain health conditions are more common in people with Down syndrome and how to improve care and quality of life.",[24,25,26],"Down Syndrome","Chromosome Disorders","Intellectual and Developmental Disabilities",[28],"Down syndrome","RECRUITING","2026-05-28",{"date":32,"type":33},"2026-06-04","ACTUAL",{"date":35,"type":33},"2026-05-01",{"date":37,"type":20},"2029-08-31",{"name":39,"class":40},"RTI International","OTHER",16,{"id":43,"slug":44,"hasResults":11,"nctId":45,"briefTitle":46,"officialTitle":46,"acronym":47,"eligibilityCriteria":48,"healthyVolunteers":11,"sex":17,"minAge":49,"maxAge":4,"enrollmentInfo":50,"targetDuration":4,"studyType":52,"phases":53,"briefSummary":55,"conditions":56,"keywords":57,"overallStatus":29,"whyStopped":4,"lastUpdateSubmitDate":63,"lastUpdatePostDateStruct":64,"startDateStruct":66,"completionDateStruct":68,"leadSponsor":70,"locationsCount":72},"100591933","use-of-a-digital-snapshot-to-reduce-use-of-restraints-during-emergency-department-visits-and-improve-experience-of-care-for-pwidd-100591933","NCT06986863","Use of a Digital Snapshot to Reduce Use of Restraints During Emergency Department Visits and Improve Experience of Care for PWIDD","SCANS","Inclusion criteria for primary participant\u002FPWIDD (person with intellectual and\u002For developmental disability):\n\n* have visited a Northwell Health Emergency Department in the last 12 months\n* have a confirmed intellectual and\u002For developmental disability\n* must be 18 years of age or older at enrollment\n* have a smart phone or tablet that connects to the internet\n* have a preferred language of English","18 Years",{"count":51,"type":20},1500,"INTERVENTIONAL",[54],"NA","The purpose of this research study is to compare the Always Uniquely Me (AUM) mobile application to regular medical care. The investigators want to know if AUM is helpful at decreasing use of restraints and improving experience in the emergency department (ED) for people with intellectual and developmental disabilities (PWIDD). The investigators will also be looking at how certain characteristics of the PWIDD participants may affect those outcomes.",[26],[58,59,60,61,62],"Intellectual and developmental disabilities","emergency department","restraint","restraint, physical","emergency department visits","2026-05-16",{"date":65,"type":33},"2026-05-19",{"date":67,"type":33},"2025-09-24",{"date":69,"type":20},"2027-12-31",{"name":71,"class":40},"Northwell Health",1,{"id":74,"slug":75,"hasResults":11,"nctId":76,"briefTitle":77,"officialTitle":78,"acronym":79,"eligibilityCriteria":80,"healthyVolunteers":81,"sex":17,"minAge":82,"maxAge":83,"enrollmentInfo":84,"targetDuration":86,"studyType":21,"phases":4,"briefSummary":87,"conditions":88,"keywords":98,"overallStatus":29,"whyStopped":4,"lastUpdateSubmitDate":105,"lastUpdatePostDateStruct":106,"startDateStruct":108,"completionDateStruct":110,"leadSponsor":112,"locationsCount":114},"100581994","assessing-intellectual-and-motor-outcomes-in-high-risk-infants-100581994","NCT06857539","Assessing Intellectual and Motor Outcomes in High-risk Infants","The ELEVATE Program for Prediction, Early Detection & Intervention in Cerebral Palsy","AIM-High","Inclusion Criteria (High Risk Group) :\n\n* Legal guardians must be able and willing to give written informed consent and to comply with the requirements of this study protocol.\n* All infants considered high risk for a diagnosis of cerebral palsy and neuro-developmental impairment will be eligible, specifically including:\n\n  * All preterm infants born ≤32 weeks Post Menstrual Age or ≤1500 gm birth weight\n  * All encephalopathic infants\n  * Neurological risk factors (e.g., cerebral birth defect, injury\u002Fmalformation on neuroimaging, persistently abnormal neurological exam)\n\n(Control Group)\n\n-A control arm will also be recruited.\n\nExclusion Criteria:\n\n* Death prior to discharge from the neonatal unit (High-Risk Infants only)\n* No parental consent (High-Risk and Control Infants)",true,"0 Days","4 Months",{"count":85,"type":20},600,"30 Months","Cerebral palsy (CP) is a condition when a baby has a brain injury that affects their movement and muscle tone. Some people with CP can have other developmental issues, like learning impairments, but many do not and have isolated issues with their motor skills. Some newborns are at higher risk of developing CP, including babies born prematurely, those who have an injury to their brain, and those who have an abnormal neurological examination. However, most babies with a higher risk of CP do not develop CP. The problem is that doctors can't tell early on who will and who will not develop CP, they can only say who has a risk of it. Therefore, these babies are followed up in out-patient clinics to see how they are progressing, usually by a neonatologist (baby doctor), often a physiotherapist, and some may also be referred to services in the community like the Early Intervention Team. If there is a significant concern, doctors will often perform a scan of the baby's brain to provide more information. Even with all this follow-up, it still usually takes at least 12 months, and can be up to 2 years, to diagnose a child as having CP.\n\nIn this study the aim is to try and reduce the age of diagnosis of CP by assessing children in high-risk out-patient clinics using novel and specific examinations. We would also like to improve our ability to predict who will need help with learning, language or other non-motor outcomes. This study is being conducted at several hospitals in Ireland, including Cork University Maternity Hospital (CUMH), The Rotunda Hospital and the Coombe Women and Infants Hospital. It is being coordinated by the In4kids network and will be conducted in the INFANT Centre\u002F University College Cork (UCC). The study has been funded by Research Ireland and the Cerebral Palsy Foundation, USA.",[89,90,91,92,26,93,94,95,96,97],"Cerebral Palsy","Cerebral Palsy (CP)","Cerebral Palsy Children","High-risk Infants","Motor Impairment","Cognitive Development","HIE - Hypoxic - Ischemic Encephalopathy","Preterm","Prematurity; Extreme",[89,99,100,101,102,103,104],"High-Risk Infant Follow-up","Motor Difficulty","Intellectual Delay","Cognitive Impairment","Hypoxic--Ischaemic Encephalopathy","Prematurity","2026-05-08",{"date":107,"type":33},"2026-05-13",{"date":109,"type":33},"2025-03-21",{"date":111,"type":20},"2030-07-31",{"name":113,"class":40},"University College Cork",4]