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23 recruiting studies matching your filters

Impact of Timing of Initiation of Sulphonylurea Therapy on Neurodevelopmental Outcomes in Individuals With Intermediate Developmental Delay, Epilepsy and Neonatal Diabetes (iDEND) Syndrome Due to the V59M Mutation in the KCNJ11 Gene

The goal of this observational study is to learn about the impact of the diabetes drug glibenclamide (glyburide) on neurodevelopment in individuals with iDEND …

Neurodevelopmental DisordersIntellectual DisabilityDevelopment Delay+3 more

Estimated

~$10 – $750

Royal Devon and Exeter NHS Foundation TrustNCT05751525

Observational

Harnessing Communication Preferences to Enhance Its Persistence and Mitigate Relapse of Challenging Behavior

The goal of this clinical trial is to evaluate how preference for communication approach (e.g., using a touch talker versus picture cards) impacts treatment ma…

Intellectual DisabilityAutism Spectrum DisorderSelf-Injurious Behavior+2 more

Estimated

~$10 – $7,500

Joel E. RingdahlNCT07278544

Congenital Muscle Disease Patient and Proxy Reported Outcome Study

The Congenital Muscle Disease Patient and Proxy Reported Outcome Study (CMDPROS) is a longitudinal 10 year study to identify and trend care parameters, adverse…

Congenital Muscular Dystrophy With ITGA7 (Integrin Alpha-7) DeficiencyAlpha-Dystroglycanopathy (Congenital Muscular Dystrophy and Abnormal Glycosylation of Dystroglycan With Severe Epilepsy)Alpha-Dystroglycanopathy (Congenital Muscular Dystrophy With Fatty Liver and Infantile-onset Cataract Caused by TRAPPC11 Mutations)+49 more

Understanding Mental Health Crises in Youth With Intellectual and Developmental Disabilities

This study is an unmatched, case-control study of 150 youth (Ages 7-17) with a parent reported Intellectual Developmental Disability (IDD) who present to Rady …

Intellectual Disability

Estimated

~$10 – $1,125

Rady Pediatric Genomics & Systems Medicine InstituteNCT05471232

Observational

Comparing Peer Support and Staff-Delivered Transportation Interventions for Young Adults With Intellectual and Developmental Disabilities (YA-IDD) on Loneliness, Social Participation, and Transportation Skills

This clinical trial will look at whether young adults with intellectual and developmental disabilities (YA-IDD) have better outcomes when a travel training int…

Intellectual Disability, Mild to ModerateDevelopmental Disability

Estimated

~$10 – $6,250

Temple UniversityNCT07505121

Coordination of Rare Diseases at Sanford

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, …

Rare DisordersUndiagnosed DisordersDisorders of Unknown Prevalence+340 more

Observational

Future Planning and Well-Being for Individuals With Intellectual Disabilities and Family Caregivers

This study will compare the effectiveness of a web-based long-term care planning tool (Map Our Life) partnered with traditional case management services to tra…

Intellectual Disability

Estimated

~$10 – $7,500

Northwell HealthNCT06065527

Investigation Into the Natural History and Metabolic and Molecular Basis of RASopathies.

The RASopathies are a group of developmental disorders caused by genetic changes in the genes that compose the Ras/mitogen activated protein kinase (MAPK) path…

RAS MutationNeurofibromatosis 1Noonan Syndrome+11 more

Estimated

~$10 – $675

Children's Hospital Medical Center, CincinnatiNCT04395495

Observational

A Stage 1 Pilot Test for Feasibility and Efficacy of a Multi-Level Intervention to Increase Physical Activity in Adults With Intellectual Disability: Physical Activity and Community EmPOWERment (PACE)

Purpose: Conduct a wait-list randomized controlled trial (RCT) of an inclusive physical activity program called PACE for adults with intellectual disability (I…

Intellectual DisabilityNeurodevelopmental DisordersAutism Spectrum Disorder+10 more

Estimated

~$10 – $6,250

University of North Carolina, Chapel HillNCT06740162

The Myelin Disorders Biorepository Project and Global Leukodystrophy Initiative Clinical Trials Network

The Myelin Disorders Biorepository Project (MDBP) seeks to collect and analyze clinical data and biological samples from leukodystrophy patients worldwide to s…

LeukodystrophyWhite Matter DiseaseLeukoencephalopathies+63 more

STXBP1 and SYNGAP1 Related Disorders (RD) Natural History Study

The purpose of this study is to find out more about STXBP1 and SYNGAP1 related disorders. The information gathered by this study will be used to prepare for cl…

Genetic DiseaseSTXBP1 Encephalopathy With EpilepsySYNGAP1-Related Intellectual Disability

Estimated

~$10 – $750

Children's Hospital of PhiladelphiaNCT06555965