Nationwide Carrier Study

 

Nationwide Children's Hospital in Columbus, Ohio is conducting a study for women called "Characterization of Clinical Skeletal and Cardiac Impairment in Carriers of Duchenne and Becker Muscular Dystrophy."

Their goal is to study the neuromuscular, cardiovascular, psychological and cognitive impact of being a genetic Glossary Link carrier of Duchenne or Becker muscular dystrophy. This study is sponsored by Parent Project Muscular Dystrophy.

To participate you must be:

  1. Female, 18 years of age or older,
  2. Able to complete testing in English, and
  3. Have a son with a diagnosis of Duchenne or Becker (both carriers and non-carriers are being recruited).  

Mothers who do not have a genetically confirmed Glossary Link mutation in the DMD Glossary Link gene are being recruited for the control group. Healthy females who are not carriers of a DMD gene mutation and do not have a child with Duchenne or Becker are also being recruited for an age-matched control group. These females must have a normal CK level.

The study consists of 3 visits to Nationwide Children's Hospital which take place on an annual basis. Each visit spans the course of one to two days and includes a number of procedures that address the neuromuscular, cardiovascular, psychological and cognitive impact that you may experience. Results of procedures done through the study may be made available to you or your primary care provider.

The study is currently able to provide up to $500 in reimbursement for travel and lodging expenses.

You can learn more by viewing the PPMD webinar on the NCH Carrier Study. You can also visit ClinicalTrials.gov (NCT02972580).

If you are interested in taking part in this study, please contact the study coordinator at Nationwide Children's Hospital to learn more:

  • Eric Camino, PhD
  • 614-722-2715
  • This email address is being protected from spambots. You need JavaScript enabled to view it. 

Posted 6/2/2017; updated 9/25/2017