The United Dystrophinopathy Project

Central Coordinating Center: University of Utah
Kevin M. Flanigan, MD, Director

Patient Information

If you are a patient, or parent of a patient, with Duchenne or Becker muscular dystrophy, and would like to take part in the United Dystrophinopathy Project database and registry, you must be seen at one of the participating centers. You must also carefully read and consider the benefits and risks of taking part.

Participating Centers:

• Children's Hospital of Philadelphia, Philadelphia, PA
• Cincinnati Children's Hospital, Cincinnati, Ohio
• University of Minnesota, Minneapolis, MN
• Nationwide Children's Hospital, Columbus, OH
• University of Iowa, Iowa City, Iowa
• University of Utah, Salt Lake City, UT
• Washington University, St. Louis, MO

We anticipate additional centers will be added over the coming year. Please check back to this website for future information.

If you have further questions, please contact us.

Informed Consent To Take Part In The UDP

In order to take part in this project, you will need to give your consent to taking part in research. Children need permission from their parents. Patients or their parents have to sign a consent form approved by the Institutional Review Board at the University of Utah. There are specific requirements for giving your consent, depending on the patient's age.

The parts of the study are described in detail in the consent documents, along with potential risks and benefits to you or your child. You can review these documents by clicking on the links below.

• Individuals 18 years and older need to sign the Consent Form (PDF).
  
  
• All subjects under age 18 need to have the signature of a parent or guardian.
  
  
  • Children between the ages of 7 and 17 need to sign the Assent Form (PDF) and have a parent or guardian sign the Parental Permission Form (PDF).
    
    
  • For children under the age of 7, only the Parental Permission Form (PDF) is required.
    
    

You need the free Adobe Acrobat Reader to view and print these files. You can get a copy here.