- Conditions
- Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency, CHARGE Syndrome, Early Infantile Epileptic Encephalopathy, FOXG1 Syndrome, KBG Syndrome, Noonan Syndrome, Severe Hemophilia A, Short Bowel Syndrome, Beta-Propeller Protein-Associated Neurodegeneration, Brain Injury of Prematurity With Periventricular Leukomalacia, Chromosome 17p13.3 Microdeletion Syndrome, Chromosome 1q43-1q44 Deletion, Cockayne Syndrome, Congenital Diaphragmatic Hernia, End-Stage Renal Disease With Cloacal Anomaly, Mitochondrial Depletion Disorder, Severe Factor VII Deficiency
- Interventions
- Family Centered pediatric palliative care for family caregivers of children with rare diseases.
- Behavioral
- Lead sponsor
- Children's National Research Institute
- Other
- Eligibility
- 12 Months to 99 Years
- Enrollment
- 480 participants
- Healthy volunteers
- Accepts healthy volunteers
- Timeline
- 2025 – 2029
- U.S. locations
- 1
- States / cities
- Washington D.C., District of Columbia
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Showing 1–9
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- Conditions
- Cerebral Palsy, Myelomeningocele, Arthrogryposis, Motor Skills Disorders, Gross Motor Development Delay
- Interventions
- adapted Chicago Run running program
- Behavioral
- Lead sponsor
- Northwestern University
- Other
- Eligibility
- 6 Years to 18 Years
- Enrollment
- 25 participants
- Healthy volunteers
- Healthy volunteers not accepted
- Timeline
- 2019 – 2024
- U.S. locations
- 1
- States / cities
- Chicago Heights, Illinois
- Conditions
- Neurologic Diseases, Hemiparesis, Quadriplegia, Muscular Dystrophies, Arthrogryposis, Spinal Cord Injuries, Charcot-Marie-Tooth, Stroke, Weakness of Extremities as Sequela of Stroke, Weakness Due to Upper Motor Neuron Dysfunction, Amyotrophic Lateral Sclerosis, Spinal Muscular Atrophy, Arm Paralysis, Cerebral Palsy
- Interventions
- Neurosleeve
- Device
- Lead sponsor
- Thomas Jefferson University
- Other
- Eligibility
- 4 Years and older
- Enrollment
- 20 participants
- Healthy volunteers
- Accepts healthy volunteers
- Timeline
- 2020 – 2026
- U.S. locations
- 2
- States / cities
- Wilmington, Delaware • Philadelphia, Pennsylvania
- Conditions
- Arthrogryposis, Craniofacial Abnormalities, Posttraumatic Stress Disorder, Depressive Disorder
- Interventions
- PTSD Checklist-Specific, Modified Flanagan Quality of Life Scale, Center for Epidemiologic Studies Depression Scale, Functional Enquiry Form, Strength, Joint ROM, Girth and Length Measurements, Study Physical Examination, PTSD, Depression, and FSS-Focused Examination, Freeman-Sheldon Specific Quality of Life Survey, Lactate, Glucose, and Adenosine Triphosphate Blood Levels
- Other
- Lead sponsor
- Freeman-Sheldon Research Group, Inc.
- Other
- Eligibility
- Not listed
- Enrollment
- 6 participants
- Healthy volunteers
- Healthy volunteers not accepted
- Timeline
- 2011 – 2017
- U.S. locations
- 1
- States / cities
- Buckhannon, West Virginia
- Conditions
- Freeman-Sheldon Syndrome, Arthrogryposis Distal Type 2A, Whistling Face Syndrome, Craniocarpotarsal Dysplasia, Craniocarpotarsal Dystrophy, Freeman-Sheldon Syndrome Variant, Sheldon-Hall Syndrome, Arthrogryposis Distal Type 2B, Gordon Syndrome, Arthrogryposis Distal Type 3, Arthrogryposis Distal Type 1, Arthrogryposis, Distal, Type 1A, Arthrogryposis Distal Type 1B, Arthrogryposis, Distal, Craniofacial Abnormalities, Arthrogryposis
- Interventions
- PTSD Checklist-Civilian (PCL-C), Modified Flanagan Quality of Life Scale, Center for Epidemiologic Studies Depression Scale (CES-D), Functional Enquiry (or Review of Systems) Form, Study of Therapeutic Outcomes and Practices in Freeman-Sheldon Syndrome (STOP-FSS) Questionnaire, FSRG Semi-Structured Quality of Life Interview (FSRG SSQLI), Medical Records Review
- Other
- Lead sponsor
- Freeman-Sheldon Research Group, Inc.
- Other
- Eligibility
- Not listed
- Enrollment
- 2 participants
- Healthy volunteers
- Healthy volunteers not accepted
- Timeline
- 2010 – 2022
- U.S. locations
- 1
- States / cities
- Buckhannon, West Virginia
- Conditions
- Cerebral Palsy, Arthrogryposis, Spinal Muscular Atrophy, Other Central Nervous System or Musculoskeletal Disorders
- Interventions
- Power mobility
- Other
- Lead sponsor
- University of Oklahoma
- Other
- Eligibility
- 14 Months to 30 Months
- Enrollment
- 41 participants
- Healthy volunteers
- Healthy volunteers not accepted
- Timeline
- 2008 – 2012
- U.S. locations
- 1
- States / cities
- Oklahoma City, Oklahoma
- Conditions
- Arthrogryposis, Craniofacial Abnormalities
- Interventions
- Lactate, Glucose, and Adenosine Triphosphate Blood Levels, Physiological Stress Test, Functional Enquiry Form, Strength, Joint ROM, Girth and Length Measurements, Study Physical Examination, Observational Gait Analysis, Mental Health Interview
- Other · Procedure
- Lead sponsor
- Freeman-Sheldon Research Group, Inc.
- Other
- Eligibility
- Not listed
- Healthy volunteers
- Accepts healthy volunteers
- Timeline
- 2014 – 2022
- U.S. locations
- 1
- States / cities
- Buckhannon, West Virginia
- Conditions
- Freeman-Burian Syndrome, Freeman-Sheldon Syndrome, Whistling Face Syndrome, Sheldon-Hall Syndrome, Freeman-Sheldon Syndrome Variant, Arthrogryposis Distal Type 1, Arthrogryposis Distal Type 3, Gordon Syndrome
- Interventions
- Guided Health History for Freeman-Burian Syndrome Questionnaire, Freeman-Burian syndrome Semi-Structured Quality of Life Interview, Medical Records Review, PTSD Checklist for DSM-5, Modified Flanagan Quality of Life Scale, Center for Epidemiologic Studies Depression Scale, Review of Systems, FACE-Q | Craniofacial - Appearance of the Face, FACE-Q | Craniofacial - Appearance Distress, FACE-Q | Craniofacial - Facial Function
- Other
- Lead sponsor
- Dufresne, Craig, MD, PC
- Other
- Eligibility
- Not listed
- Enrollment
- 20 participants
- Healthy volunteers
- Healthy volunteers not accepted
- Timeline
- 2022 – 2023
- U.S. locations
- 1
- States / cities
- Fairfax, Virginia
- Conditions
- Upper Extremity Dysfunction
- Interventions
- Movement Enhancing Device
- Device
- Lead sponsor
- University of Delaware
- Other
- Eligibility
- 1 Month to 6 Years
- Enrollment
- 30 participants
- Healthy volunteers
- Accepts healthy volunteers
- Timeline
- 2014 – 2016
- U.S. locations
- 3
- States / cities
- Newark, Delaware • Wilmington, Delaware