Guest post by Joanna Johnson. Joanna is mom to Elliott and Henry, both living with Duchenne muscular dystrophy.
As you may know, PPMD is involved in a study funded by the NINDS to learn about our community’s thoughts about clinical trials. I am on the study leadership team. Being a part of this study has been enlightening and affirming for me as a parent, even more so as a parent with a son who participated in a clinical trial. Living with this disease is heartbreak and anguish, simply put, but the idea of potential treatment helps to ease the pain and hope is often times the necessary remedy to enable us to cope and give us strength.
This is an exciting time for us as a community as there are actual promising clinical trials in which our sons can participate. However, with as far as we have come, we are painfully realizing that there is still much to learn. As we move forward, this is your opportunity to have a voice and share your thoughts and feelings about clinical trial participation with key stakeholders. Your voice matters and needs and deserves to be heard.
Clinician researchers and companies sponsoring or planning clinical trials have told us that they want to know how the community thinks and feels about clinical trials. The NIH and other government agencies have told us the same thing. Please help us by sharing your thoughts and/or experiences with clinical trials.
► If your child has been in a clinical trial answer this survey:
► If your child is at least 4 years old and has never been in a clinical trial answer this survey:
These are anonymous surveys. No one knows who answers.