Duchenne or Becker muscular dystrophy or female carrier
Must be a patient at an institution that has an established EHR integration set up with PPMD's Interchange
Must provide consent to have their EHR data pushed to the Interchange and linked to existing Registry data, if applicable
You may not be if
Individuals with other forms of muscular dystrophy
Individuals who do not provide consent
Individuals with Duchenne/Becker who have severe mobility/strength issues need to provide consent and participate with assistance from a caregiver. Adults with communication impairments and/or intellectual disabilities (considered the "decisionally impaired" group for purposes of this study) will be able to consent with the assistance of the adults who are designated Legally Authorized Representative (LAR). Without assistance, this group will be excluded from participation because the consent process.
