La Force DMD is seeking your participation in a research survey for parents or guardians of sons with Duchenne muscular dystrophy and adult men (18+ years) with Duchenne. This is an international survey about your preferences and priorities for Duchenne treatments.
Regulatory agencies such as the EMA and FDA rely on the input of patients, families, and drug approval examples from other countries to inform treatment approval decisions. This preference survey will be the first study to measure preferences for Duchenne treatments internationally. The findings from this survey will be returned to participating patient advocacy organizations and may be used to inform policymakers about what you want out of treatments, and what risks you are willing to take.
The goal of the survey is to learn about your preferences and priorities for Duchenne treatments and to see if preferences vary internationally. Duchenne patient and advocacy organizations from Australia, Belgium, Canada, the Netherlands, the United Kingdom, and the United States have come together along with researchers at Johns Hopkins University to conduct this survey.
This survey is about your preferences and priorities for Duchenne muscular dystrophy treatments. This is the first study to measure Duchenne preferences internationally. DMD advocacy organizations globally have come together to launch this survey, and results will be returned to patient advocacy organizations and used to inform policymakers about what you want out of treatments, and what risks you are willing to take.
Survey info
- Online
- 45-60 minutes
- No payment
- Some questions might make you feel upset.
- Treatments described include risks of severe side effects.
- It is your choice to participate
- You can stop the survey at any time
- Results will be anonymous
Who can participate
- Male adults (18 years+) with DMD
- Parents of living sons with DMD
- People currently living in Australia, Belgium, Canada, Netherlands, UK, or the US
- Don’t match this description? Reach out, and we will accommodate
This research survey is online and will take 45-60 minutes. You will not be paid for completing the survey. It is possible that some of the questions in this survey might make you feel upset. The treatments that we describe include risks of serious side effects. It is your choice to complete the survey. You can stop the survey at any time. The results of the survey will be anonymous.
To participate, please email the survey@jessesjourney.com
If you have questions or concerns, please contact Norah Crossnohere at ncrossn1@jhu.edu
