An observational study in Muscular Dystrophy, Arthrogryposis and Spinal Muscular Atrophy, sponsored by Nemours Children's Clinic. Completed. Open to participants aged 2 Years to 21 Years. Per ClinicalTrials.gov, last updated 2024-02-02.
Sponsored by Nemours Children's Clinic · Observational
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.
224 studies on the registry are indexed under Muscular Dystrophies; 48 are open to participants now.
This study's enrollment of 25 is below the median of 111 across 74 observational studies indexed under Muscular Dystrophies.
Browse Muscular Dystrophies studies →Nemours Children's Clinic is the lead sponsor of 130 studies on the registry; 26 are open to participants now.
Of its 9 completed or terminated interventional studies of FDA-regulated products, 6 (67%) have results posted.
Counted across the registry records on this site, refreshed daily.
People with Neuromuscular disease who use the Wilmington Robotic Exoskleton
Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.
Exclusion Criteria:
When the subject used the WREX Orthosis
Device: WREX orthosis
Upper extremity exoskleton used to assist movement
Canadian Occupational Performance Measure (COPM)
Performance score on The Canadian Occupational Performance Measure (COPM). The total score range is 1-10. A score of 1 indicates indicates poor performance and low satisfaction and 10 indicates good performance and high satisfaction. The numbers indicate scores on a scale.
Time frame: Surveys were conducted at a single timepoint for each subject. The surveys were administered over a 4-month period for all the subjects.
| Milestone | WREX Orthosis |
|---|---|
| Started | 25 |
| Completed | 25 |
| Not completed | 0 |
Performance score on The Canadian Occupational Performance Measure (COPM). The total score range is 1-10. A score of 1 indicates indicates poor performance and low satisfaction and 10 indicates good performance and high satisfaction. The numbers indicate scores on a scale.
| score on a scale | WREX Orthosis |
|---|---|
| Canadian Occupational Performance Measure (COPM) | 7.09 ± 2.15 |
Non-serious events are listed at a 0% frequency threshold.
| Group | Deaths | Serious | Other |
|---|---|---|---|
| WREX Orthosis | 0/25 (0%) | 0/25 (0%) | 0/25 (0%) |
| Age, Continuous(years) | WREX Orthosis |
|---|---|
| Mean | 8.72 ± 1.38 |
| Sex: Female, Male(Participants) | WREX Orthosis |
|---|---|
| Female | 9 |
| Male | 16 |
| Race and Ethnicity Not Collected(Participants) | WREX Orthosis |
|---|
| Region of Enrollment(Participants) | WREX Orthosis |
|---|---|
| United States | 25 |
No study locations are listed for this record.
The record gives a start of Jul 2014, a primary completion of Oct 2014 and a completion of Jul 2015. It does not say whether these dates are actual or estimated.
Results were first posted in Feb 2024, 9 years 4 months after primary completion.
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This study is completed, as verified in Jan 2024. You cannot join it, but the record below documents what was studied.
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