Spinal Muscular Atrophy Clinical Trial
Official title:
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. The survey consists of a set of questions a) performed online and b) performed over the phone.
The WREX (Wilmington Robotic EXoskeleton) is being used by many children with neuromuscular conditions such as arthrogryposis and muscular dystrophy. Nemours/A.I. duPont Hospital for Children alone has provided a WREX for about 80 children in the last 3 years. This is being done through the orthopedic and muscle clinics in the hospital. We would like to perform a retrospective study to see how well the children are doing with the WREX. We propose getting this feedback through a survey administered to families using the WREX. The survey will be performed in two parts. 1) A phone survey will use the Canadian Occupational Performance Measure (COPM). 2) an online survey with additional questions. The parents are asked to submit answers on behalf of the children if they are unable to. ;
Status | Clinical Trial | Phase | |
---|---|---|---|
Completed |
NCT04851873 -
Safety and Efficacy of Intravenous OAV101 (AVXS-101) in Pediatric Patients With Spinal Muscular Atrophy (SMA)
|
Phase 3 | |
Completed |
NCT03223051 -
Development of a Space Exploration Assessment for Children With Spinal Muscular Atrophy
|
N/A | |
Completed |
NCT04335942 -
Characterization of the Postural Habits of Wheelchair Users Analysis of the Acceptability of International Recommendations in the Prevention of Pressure Sores Risk by Using a Connected Textile Sensor
|
N/A | |
Recruiting |
NCT05794139 -
Safety and Efficacy of NMD670 in Ambulatory Adult Patients With Type 3 Spinal Muscular Atrophy
|
Phase 2 | |
Not yet recruiting |
NCT06300996 -
Spinal Cord Stimulation for the Treatment of Motor Deficits in People With Spinal Muscular Atrophy - Upper Limb
|
N/A | |
Completed |
NCT02003937 -
Aerobic Training in Patients With Spinal Muscular Atrophy Type III
|
N/A | |
Not yet recruiting |
NCT00961103 -
Motor Development and Orthoses in Spinal Muscular Atrophy (SMA)
|
N/A | |
Completed |
NCT00227266 -
Valproic Acid and Carnitine in Patients With Spinal Muscular Atrophy
|
Phase 2 | |
Completed |
NCT00374075 -
Study of Safety and Dosing Effect on SMN Levels of Valproic Acid (VPA) in Patients With Spinal Muscular Atrophy
|
Phase 1 | |
Enrolling by invitation |
NCT05539456 -
Reliability and Validity of the Turkish Version of the PedsQL 3.0 Neuromuscular Module for 2-to 4- Year-old
|
||
Recruiting |
NCT05779956 -
Personalized Medicine for SMA: a Translational Project
|
||
Recruiting |
NCT03300869 -
Natural History of Types 2 and 3 SMA in Taiwan
|
||
Recruiting |
NCT03217578 -
Neonatal Spinal Muscular Atrophy (SMA) Screening
|
||
Completed |
NCT01703988 -
An Open-label Safety, Tolerability and Dose-Range Finding Study of Multiple Doses of Nusinersen (ISIS 396443) in Participants With Spinal Muscular Atrophy
|
Phase 1/Phase 2 | |
Withdrawn |
NCT02235090 -
Study of Feasibility to Reliably Measure Functional Abilities' Changes in Nonambulant Neuromuscular Patients Without Trial Site Visiting
|
N/A | |
Completed |
NCT02123186 -
Newborn Screening for Spinal Muscular Atrophy
|
N/A | |
Completed |
NCT00756821 -
A Pilot Study of Biomarkers for Spinal Muscular Atrophy
|
N/A | |
Completed |
NCT00004771 -
Phase II Study of Leuprolide and Testosterone for Men With Kennedy's Disease or Other Motor Neuron Disease
|
Phase 2 | |
Recruiting |
NCT05366465 -
Quality of Life and Participation of the Adult With Spinal Muscular Atrophy in France
|
||
Recruiting |
NCT06310421 -
Spinal Muscular Atrophy Neonatal Screening Program
|