Study of Skeletal and Cardiac Impairment in Carriers of Duchenne and Becker

Characterization of Clinical Skeletal and Cardiac Impairment in Carriers of Duchenne and Becker

Questions and Answers

What stage is this research?

Closed enrollment

What is the goal or purpose of this study?

To study the neuromuscular, cardiovascular and psychological/cognitive impact of being a genetic carrier of Duchenne or Becker muscular dystrophy.

Who is the sponsor of this study?

This study is sponsored by Parent Project Muscular Dystrophy.

What are the inclusion (enrollment) criteria for this study?

  • 18 years of age and older
  • Able to complete testing in English
  • A genetically confirmed mutation in the Duchenne gene with an affected child

    OR

    Duchenne and Becker mothers with NO somatic mutation in the Duchenne gene (females who are not carriers of Duchenne/Becker but have an affected child)

What do I have to do if I decide to participate in this study?

We are not looking for new participants.

Where does the study take place?

This study takes place at Nationwide Children’s Hospital in Columbus, Ohio.

Are travel expenses to the study site reimbursed?

The study is currently able to provide up to $500 in reimbursement for travel and lodging expenses. Please contact the study coordinator for additional information about reimbursement.

Why should I consider participating in this study?

While a primary benefit of the study is in understanding the impact of being a genetic carrier of Duchenne or Becker, the study also provides and pays for several tests such as an MRI and Cardiovascular Stress test which may be of value to you or your physician.

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