What do you think about clinical trials?

Though clinical trials aren’t for everyone, each trial helps move us toward better treatments.  What do you think about clinical trials?  Share your thoughts, so PPMD can give the best advice to professionals running trials.

At the recent World Muscle Society and Child Neurology Society meetings, we heard reports from companies and clinicians about ongoing and upcoming clinical trials—these were exciting updates and hopeful new reports.  PPMD also reported back to companies and clinicians about parents’ experiences having their children in clinical trials.  We presented a poster of results from Part 1 of the Clinical Trial Expectations program (a grant funded by the National Institutes of Neurological Disorders and Stroke) at both meetings.  Attendees were very interested in hearing about the perspectives of families.  In fact, at WMS the study was chosen for a “poster highlights” oral presentation, and we won an award for the study. The family perspective is valued!

 

A common question was, “What can we [as clinicians or companies] do to help families have better experiences in clinical trials?”  Another was, “How can we get more families interested in clinical trials?” We have some good ideas from part 1 of the project. But to better answer the questions, we need part 2.  Part 2 includes surveys of parents in the United States and Canada.  There is a survey for almost everyone, and we hope you will participate.  The surveys are anonymous (no one knows who filled it out).  We’ll share the results of part 2 with companies, clinicians, the NIH, and of course back to the community.

 

If you have Duchenne or Becker, you are at least 12 years old, and you have been in a clinical trial in the past 3 years:

Please take part in a phone interview, which will take about 30 minutes.  Learn more by emailing me at holly@parentprojectmd.org.

 

If you are a parent/guardian and your child has NEVER been in a clinical trial:

Take this survey if your child with Duchenne or Becker muscular dystrophy has never been in a clinical trial.  This could be because you don’t want a clinical trial, or because you don’t have access to the right one. Your child must receive care for Duchenne or Becker in the United States or Canada. The survey will take about 20 minutes to complete.

Learn more and take the survey here http://tinyurl.com/PPMDparent2

 

If your child has been in a clinical trial*:

Take this survey if your child with Duchenne or Becker is participating, or has participated, in a clinical (drug) trial in the United States or Canada within the past 3 years. The survey will take about 30 minutes to complete.

 

Learn more and take the survey here http://tinyurl.com/PPMDparent1

* A clinical trial tests a potential treatment in humans to see if it is safe and whether it works.

 

If your child has been in a natural history study:

Take the survey if your child with Duchenne or Becker has participated in a natural history study in the United States of Canada within the past 3 years. The survey will take about 20 minutes to complete.

 

Take the survey here:

https://www.surveymonkey.com/s/ppmd_parent_survey2

                                                                                                                   

Please share your opinions, good or bad, about clinical trials.  We want to gather a broad range of opinions and experiences so PPMD can advise companies and clinical trial sites about what families want and prefer.

 

If you have questions or suggestions, please email me at holly@parentprojectmd.org.

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