Introduction:

The purpose of the Clinical Experience Survey is to evaluate the care provided at PPMD Certified Duchenne Care Centers, or other centers that provide Becker and Duchenne Care, from the perspective of either the patient or the parents.  Answers provided by patients and parents will be compared, in aggregate, with information provided by the center.  It is hoped that answers provided by the patients and parents will support information provided by the center.  Information gathered from centers not yet certified will be helpful for future consideration of certification.

 

About this survey:

·         This survey is very short and should take you less than 15 minutes to complete

·         All answers are anonymous

·         No patient health information (PHI) is being collected

 

Important:

o   If you have more than one child with Becker/Duchenne, please complete a survey for each child.

o   If you or your child (referred to in this survey as "the patient") is seen at more than one center, please complete a survey for each center.

 

Survey:

 

The following questions pertain either to you (if you are the person living with Becker/Duchenne muscular dystrophy) or your child (who has been diagnosed with Becker/Duchenne muscular dystrophy).