Clinical trials: Arthrogryposis
Arthrogryposis Multiplex Congenita (AMC)
Technical Feasibility Study of Ultrasound Muscle Imaging in Antenatal Ultrasound
The objective of the study is to evaluate the performance of muscle ultrasound sections on antenatal ultrasound between 21-24 amenorrhea weeks for the screening of muscle atrophy, in a sample of low-risk and high-risk pregnancies…
- Trial name
- FetUS (NCT06130592)
- Testing
- ultrasound muscle imaging technique
- Where
- 2 sites in France
- Volunteers
- 230 people, healthy volunteers welcome
- Sponsor
- University Hospital, Grenoble
Cerebral Palsy, Myelomeningocele
Ready, Set, Go! A Physical Fitness Intervention for Children With Mobility Challenges
Barriers to keeping and maintaining fitness as a young person with a disability exist across many domains of access to community locations such as fitness centers, so looking outside of these establishments may be necessary to…
- Conditions
- Cerebral Palsy, Myelomeningocele, Arthrogryposis, Motor Skills Disorders
- Trial name
- NCT04789746
- Testing
- adapted Chicago Run running program
- Where
- United States
- Volunteers
- 25 people
- Sponsor
- Northwestern University
Assessment of Physical Examination Skills for the Cardiovascular System, Determining Levels of Academic Self-Efficacy
Examining the Effects of ARCS-Based Education on Cardiovascular System Physical Examination Skills, Motivation, and Self-Efficacy Levels in Nursing Students
Objective: The purpose of this study is to determine the effect of ARCS-based nursing education on skill levels, motivation, and self-efficacy in the physical examination of the cardiovascular system.
- Conditions
- Assessment of Physical Examination Skills for the Cardiovascular System, Determining Levels of Academic Self-Efficacy, Determining Motivation Levels, Evaluation of the Effectiveness of the ARCS Intervention
- Trial name
- NCT07733479
- Testing
- ARCS Model Education, Structured Supplementary Training Based on the ARCS Motivation Model
- Where
- Turkey (Türkiye)
- Volunteers
- 100 people, healthy volunteers welcome
- Sponsor
- Cumhuriyet University
Arthrogryposis
Continuous Passive Motion Device for Children With Arthrogryposis
The Investigators are investigating a continuous passive motion device to exercise the knee of young children with arthrogryposis after they have had knee surgery.
- Trial name
- NCT06192134
- Testing
- CPM device
- Volunteers
- 5 people
- Sponsor
- Nemours Children's Clinic
User of an Upper Limb Assistance Device, User Experience
Impact Study on Users of Upper Limb Assistive Devices
This impact study of upper limb (UL) assistance devices is part of the Exploratory PEPR O2R "Robotic assistance for human movements." The integrated project PI3 "ASSISTMOV," composed of a multidisciplinary team in engineering and…
- Conditions
- User of an Upper Limb Assistance Device, User Experience, Post-stroke, Spinal Cord Injury
- Trial name
- AMUSE (NCT07429188)
- Testing
- interviews and questionnaires
- Where
- 2 sites in France
- Volunteers
- 150 people
- Sponsor
- Association APPROCHE
Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia
Palliative Care Needs of Children With Rare Diseases and Their Families
The palliative care needs of family caregivers of children with rare diseases and their children are largely unmet, including the need for support to prepare for future medical decision making.
- Conditions
- Trisomy 13 Syndrome, Arthrogryposis Congenita Multiplex With Intestinal Atresia, Asparagine Synthetase Deficiency, CHARGE Syndrome
- Trial name
- FACE-Rare (NCT06938542)
- Testing
- Family Centered pediatric palliative care for family caregivers of children with rare diseases.
- Where
- United States
- Volunteers
- 480 people, healthy volunteers welcome
- Sponsor
- Children's National Research Institute
Arthrogryposis Multiplex Congenita, Piezo2 Mutation Gain of Function
Piezo2-related Arthrogryposis & physiopathOLOgy 3
Study type: Observational, non-interventional, single-center, descriptive study. Goal of the study: The goal of this observational study is to characterize the intensity, variability, and qualitative features of pain in patients…
- Trial name
- PAOLO3 (NCT07360574)
- Where
- France
- Volunteers
- 12 people
- Sponsor
- University Hospital, Grenoble
Neurologic Diseases, Hemiparesis
NuroSleeve Powered Brace & Stimulation System to Restore Arm Function
The purpose of this study is to investigate if a person with weakness or paralysis in one or both arms, can use the NuroSleeve combined powered arm brace (orthosis) and muscle stimulation system to help restore movement in one…
- Conditions
- Neurologic Diseases, Hemiparesis, Quadriplegia, Muscular Dystrophies
- Trial name
- NCT04798378
- Testing
- Neurosleeve
- Where
- 2 sites in United States
- Volunteers
- 20 people, healthy volunteers welcome
- Sponsor
- Thomas Jefferson University
Success Rate, Self-Efficacy
Success, Academic Self-efficacy; ARCS Model
Cassels and Redman have offered some suggestions such as teaching students basic ethical principles and theories, the International Council of Nurses (ICN) Code of Ethics, and the rights and laws of nurses in all kinds of ethical…
- Trial name
- NCT06887790
- Testing
- Education method (ARCS)
- Where
- Turkey (Türkiye)
- Volunteers
- 72 people, healthy volunteers welcome
- Sponsor
- Muş Alparslan University
Muscular Dystrophy, Arthrogryposis
WREX Outcome Study
This study is to evaluate how the Wilmington Robotic Exoskeleton (WREX) is working for children who are using the WREX, or have used it in the past.
- Conditions
- Muscular Dystrophy, Arthrogryposis, Spinal Muscular Atrophy
- Trial name
- NCT02218593
- Testing
- WREX orthosis
- Volunteers
- 25 people
- Sponsor
- Nemours Children's Clinic
Arthrogryposis Multiplex Congenita (AMC)
Pediatric and Adult Registry for Patients With ARThrogryposis
The aim of the study is Epidemiological Evaluation of a single-centre national cohort of patients with Arthrogryposis multiplex congenita (AMC)
- Trial name
- PARART (NCT05673265)
- Where
- France
- Volunteers
- 230 people, healthy volunteers welcome
- Sponsor
- University Hospital, Grenoble
Arthrogryposis Multiplex Congenita, AMC-Arthrogryposis Multiplex Congenita
Arthrogryposis Multiplex Congenita in Pediatric Age: Correlation Between MUScular MRI and Functional Evaluation
The aim of our study is to evaluate the correlation between quantified fibro-adipous infiltration of muscles on MRI assessed by MERCURI Score and the functional abilities (deficiencies, activity limitations and social…
- Conditions
- Arthrogryposis Multiplex Congenita, AMC-Arthrogryposis Multiplex Congenita, Pediatric ALL
- Trial name
- AMUSE (NCT05393375)
- Testing
- No intervention
- Where
- France
- Volunteers
- 97 people
- Sponsor
- University Hospital, Grenoble
Freeman-Burian Syndrome, Freeman-Sheldon Syndrome
Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome
The purpose of this study is to evaluate the difference in diagnosis accuracy, treatment outcomes, patient perspectives, facial function and walking ability, emotional and social health, and respiratory complications between…
- Conditions
- Freeman-Burian Syndrome, Freeman-Sheldon Syndrome, Whistling Face Syndrome, Sheldon-Hall Syndrome
- Trial name
- FINDFSS (NCT05419245)
- Testing
- Guided Health History for Freeman-Burian Syndrome Questionnaire, Freeman-Burian syndrome Semi-Structured Quality of Life Interview, Medical Records Review
- Where
- United States
- Volunteers
- 20 people
- Sponsor
- Dufresne, Craig, MD, PC
Freeman-Sheldon Syndrome, Arthrogryposis Distal Type 2A
Survey Study and Records Review of Treatment Outcomes in Freeman-Sheldon Syndrome
Freeman-Sheldon syndrome (FSS) is a rare muscle disorder present before birth, involving primarily problems of the face and skull and the hands and feet.
- Conditions
- Freeman-Sheldon Syndrome, Arthrogryposis Distal Type 2A, Whistling Face Syndrome, Craniocarpotarsal Dysplasia
- Trial name
- STOP-FSS (NCT01144741)
- Testing
- PTSD Checklist-Civilian (PCL-C), Modified Flanagan Quality of Life Scale, Center for Epidemiologic Studies Depression Scale (CES-D)
- Where
- United States
- Volunteers
- 2 people
- Sponsor
- Freeman-Sheldon Research Group, Inc.
Arthrogryposis, Craniofacial Abnormalities
Study of Resting and Exercising Body Functioning in Freeman-Sheldon Syndrome and Related Conditions
The hypotheses of the present study of Freeman-Sheldon syndrome (FSS) and related conditions are: (1) that exercise capacity is lower in FSS patients versus normal controls, and the lower exercise capacity is due to changes in…
- Trial name
- FSS-EDICT I (NCT01306994)
- Testing
- Lactate, Glucose, and Adenosine Triphosphate Blood Levels, Physiological Stress Test, Functional Enquiry Form
- Where
- United States
- Volunteers
- healthy volunteers welcome
- Sponsor
- Freeman-Sheldon Research Group, Inc.
Diagnosis of Arthrogryposis Amyoplasia or Distal Arthrogryposis, 5 Day Multidisciplinary Evaluation in AMC Clinic of the National Reference Center
Mercuri Analysis Contribution on Handicap Evaluation in ArthrogypOsis, a Congenital Neuromuscular Disease
The aim is to evaluate the correlation of quantified fibro-adipous infiltration of muscles, using the MRI-based Mercuri score, with deficiencies, activity limitations and social participation in patients with arthrogryposis…
- Conditions
- Diagnosis of Arthrogryposis Amyoplasia or Distal Arthrogryposis, 5 Day Multidisciplinary Evaluation in AMC Clinic of the National Reference Center, With Physical Medecin, Medical Genetic and Imaging Departments at the Hospital Grenoble Alpes
- Trial name
- MACHAON (NCT05137756)
- Testing
- no intervention
- Where
- France
- Volunteers
- 53 people
- Sponsor
- University Hospital, Grenoble
Xlsma, DMD
Multi-center Clinical Study on the Diagnosis and Treatment Management of Rare Neurological Disease in Children
The incidence of rare diseases is extremely low, the disease is numerous, the symptoms are serious, and the detection technology is complicated. Countries have different definitions of rare diseases.
- Conditions
- Xlsma, DMD, X-ALD, TSC
- Trial name
- NCT03649919
- Where
- China
- Sponsor
- Children's Hospital of Fudan University
Upper Extremity Dysfunction
Movement Enhancing Device for Children
The purpose of this study is to assess: 1) how infants move their bodies to explore, play, and solve problems, 2) if this is different in a high-risk group of infants, and 3) if these abilities can be advanced in a high-risk…
- Trial name
- NCT01959581
- Testing
- Movement Enhancing Device
- Where
- 3 sites in United States
- Volunteers
- 30 people, healthy volunteers welcome
- Sponsor
- University of Delaware
Arthrogryposis, Craniofacial Abnormalities
Study of Quality of Life in Freeman-Sheldon Syndrome and Related Conditions
Freeman-Sheldon syndrome (FSS) is a rare human neuromusculoskeletal disorder present before birth, involving primarily limb and craniofacial deformities.
- Conditions
- Arthrogryposis, Craniofacial Abnormalities, Posttraumatic Stress Disorder, Depressive Disorder
- Trial name
- FSS-QLS (NCT01307475)
- Testing
- PTSD Checklist-Specific, Modified Flanagan Quality of Life Scale, Center for Epidemiologic Studies Depression Scale
- Where
- 2 sites in United States, Guatemala
- Volunteers
- 6 people
- Sponsor
- Freeman-Sheldon Research Group, Inc.
Cerebral Palsy, Arthrogryposis
Effects of Power Mobility on Young Children With Severe Motor Impairments
The purpose this study is to determine the effects of power mobility on the development and function of young children of young children whose severe physical disabilities limit their exploratory behaviors and may unnecessarily…
- Conditions
- Cerebral Palsy, Arthrogryposis, Spinal Muscular Atrophy, Other Central Nervous System or Musculoskeletal Disorders
- Trial name
- NCT01028833
- Testing
- Power mobility
- Where
- United States
- Volunteers
- 41 people
- Sponsor
- University of Oklahoma