A Study To Determine Why Children With SMA and DMD Are Diagnosed Late and Start Treatment Late
Phase: Recruiting
First Posted: March
Condition(s): Spinal Muscular Atrophy (SMA), Duchenne Muscular Dystrophy (DMD)
What Is the Purpose of This Study?
To determine which socioeconomic, system and health literacy factors play a role in time to diagnosis and treatment.
Who Can Take Part in This Study?
- Parents and caregivers of children with spinal muscular atrophy (SMA) or Duchenne muscular dystrophy (DMD)
What Will Happen During This Study?
- Parents and caregivers will fill out a survey or take a health literacy assessment.
Will We Be Paid for This Study?
No, participants will not be compensated for their time.
Principal Investigator
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Spinal muscular atrophies (SMA) are a group of genetic (passed down by parents) diseases that affect motor neurons (nerve cells) in the spinal cord, causing the weakening of voluntary muscles (muscles that you control).
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