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Clinical Trials/NL-OMON50307
NL-OMON50307
Recruiting
Not Applicable

Outcome measures in Duchenne Muscular Dystrophy: A Natural History Study - Duchenne natural history study

eids Universitair Medisch Centrum0 sites20 target enrollmentTBD

Overview

Phase
Not Applicable
Intervention
Not specified
Conditions
Duchenne Muscular Dystrophy
Sponsor
eids Universitair Medisch Centrum
Enrollment
20
Status
Recruiting
Last Updated
2 years ago

Overview

Brief Summary

No summary available.

Registry
who.int
Start Date
TBD
End Date
TBD
Last Updated
2 years ago
Study Type
Observational invasive

Investigators

Eligibility Criteria

Inclusion Criteria

  • NON AMBULANT DMD PATIENTS
  • 1\. Children, teenagers and adults from the age of 5 with DMD, who have lost the
  • ability to walk 10 meters with no support
  • 2\. The diagnosis of DMD must be documented by genetic testing.
  • 3\. Patients should preferably have deletions amenable of skipping of exons 51
  • or 53 or 45 or 44 or 46 or 50 or 52\.
  • 4\. Patients should be capable of sitting upright in a wheelchair for at least
  • 5\. Patients should be stable from a respiratory point of view., AMBULANT DMD
  • 1\. Ambulant children from 5 years old and teenagers with DMD, and potential
  • candidates for future genetic therapies with antisense oligomer (AO) exon

Exclusion Criteria

  • NON AMBULANT DMD PATIENTS:, 1\. Patients who are currently involved in
  • interventional clinical trials aimed at restoring dystrophin will be excluded,
  • as their data could not be used to establish natural history of the disease
  • (participation in a previous interventional clinical trial prior to 6 months
  • from being recruited in the study is not an exclusion criterion)
  • 2\. Patients with severe intellectual impairment, who would be unable to
  • cooperate with examination
  • 3\. Patients/families we anticipate may have emotional/ psychological problems
  • if recruited in into a natural history study
  • 4\. Symptomatic cardiac failure

Outcomes

Primary Outcomes

Not specified

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