Trial · NCT07286565
Active NBS Study: Decentralised Monitoring Motor Development in Children With Duchenne Muscular Dystrophy or Spinal Muscular Atrophy Identified by Newborn Screening
NCT07286565, Not applicable, Recruiting, Centre Hospitalier Universitaire de Liege
3 sourcestrials-2026-11-12-0.5.0
Cite this record
ConductScience Library. Active NBS Study: Decentralised Monitoring Motor Development in Children With Duchenne Muscular Dystrophy or Spinal Muscular Atrophy Identified by Newborn Screening. Trials, record NCT07286565. Release trials-2026-11-12-0.5.0, 12 Nov 2026. https://conductscience.org/library/trials/NCT07286565
On this page
Trial
As registered on ClinicalTrials.gov, in the graph's capture of the registry.
- Title
- Active NBS Study: Decentralised Monitoring Motor Development in Children With Duchenne Muscular Dystrophy or Spinal Muscular Atrophy Identified by Newborn Screening
- NCT number
- NCT07286565
- Status
- Recruiting
- Phases
- Not applicable
- Enrollment
- 100 participants, estimated
- Lead sponsor
- Centre Hospitalier Universitaire de Liege
- Conditions
- Spinal Muscular Atrophy (SMA), Duchenne Muscular Dystrophy (DMD)
- Interventions
- MAIJU, Syde, Questionnaires, PedsQL Questionnaire
- First posted
- 2025-12-16
- Last updated
- 2025-12-16
Source ClinicalTrials.gov
Registered outcomes9
Each outcome the trial registered, primary first, in ClinicalTrials.gov's words.
| List | Outcome | Time frame | Description |
|---|---|---|---|
| Primary | Digital Mobility Monitoring Compliance | 4 weeks of recording periods every 3 months over 2 years | Measure of participant adherence to wearing the Syde® device: total recording time. |
| Primary | Digital Mobility Monitoring Compliance | 4 weeks of recording periods every 3 months over 2 years | Measure of participant adherence to wearing the Syde® device: number of valid recording days (≥4 hours) |
| Primary | Digital Mobility Monitoring Compliance | 4 weeks of recording periods every 3 months over 2 years | Measure of participant adherence to wearing the Syde® device: time to reach 50 and 180 hours of recording. |
| Primary | Digital Mobility Monitoring Compliance | 1 day of recording periods every month over 2 years | Measure of participant adherence to wearing the MAIJU® device using total recording time. |
| Primary | Walking Pattern Characteristics | 4 weeks of recording periods every 3 months over 2 years | Analysis of walking sequences: maximal walking sequence duration |
| Primary | Walking Pattern Characteristics | 4 weeks of recording periods every 3 months over 2 years | Analysis of walking sequences: maximal distance walked in a single sequence. |
| Primary | Walking Pattern Characteristics | 4 weeks of recording periods every 3 months over 2 years | Analysis of walking sequences: maximal 30-minute walking distance. |
| Primary | Reliability | Baseline, 1 year, 2 years. | Inter Class Correlation (ICC2K) when comparing the first and the second half of recordings that includes more than 100 hours AND more than 2000 steps |
| Primary | Group Differences in Digital Variables | Age 2, 3 and 4 years | Comparison of digital mobility metrics across subgroups defined by the number of SMN2 copies (SMA patients) and age's symptom appearance with 1. Patients with SMA symptoms at treatment initiation 2. Patients with 2 copies of SMN2 and no symptoms at treatment initiation 3. Patients with 3 copies of SMN2 and no symptoms at treatment initiation 4. Patients with 4 copies of SMN2 5. Healthy controls |
Source ClinicalTrials.gov
Outcomes0
Each outcome the trial posted results for, in ClinicalTrials.gov's words.
None in this release.
Results by group0
Each measurement the trial posted, group by group, in the words and numbers it posted.
None in this release.
Participant flow0
How many started, completed or left each group, period by period.
None in this release.
Adverse events0
Each adverse event the trial posted, group by group: the participants affected out of those at risk.
None in this release.
Adverse event totals0
The totals the trial posted for each group.
None in this release.
Papers0
The papers the trial lists on ClinicalTrials.gov.
None in this release.
Grants0
The grants NIH RePORTER links to the trial, newest funded first: NIH's, and some of AHRQ's, CDC's, FDA's and VA's. Each shows its title, principal investigators, organization and funder in its newest year.
None in this release.
Trial comparisons0
Comparisons of the trial's two groups, calculated by ConductScience from the counts it posted.
None in this release.
Tests0
The ConductCognition tests this trial's registered outcomes name, as ScienceGraph matched them in trial-tests-2026-11-12-0.2.1.
None in this release.
Data dates
The day each source was copied for this release.
Sources 3
- ClinicalTrials.gov's posted results, through CTTI's AACTFreely available. Acknowledgement requested
- ClinicalTrials.govNo license stated
- NIH RePORTER's clinical studies and project filesPublic domain
Each source's terms
- ClinicalTrials.gov's posted results, through CTTI's AACTClinicalTrials.gov data via Aggregate Analysis of ClinicalTrials.gov (AACT), CTTI. CTTI makes its materials freely available and requests acknowledgement. https://aact.ctti-clinicaltrials.org/documentation/299
- ClinicalTrials.govnone stated
- NIH RePORTER's clinical studies and project filesPublic domain (NIH RePORTER)
ClinicalTrials.gov's data carry an international copyright outside the United States: https://clinicaltrials.gov/about-site/terms-conditions.
For software
Read this trial from software.
The record and each of its lists are JSON, twenty rows a page. No key.
GET https://conductscience.org/api/trials/v1/NCT07286565
GET https://conductscience.org/api/trials/v1/NCT07286565/registered