Roche, a Swiss multinational healthcare company, is looking for Canadians living with Duchenne muscular dystrophy and caregivers to participate in a research interview. Please see their letter to the community below.
We are carrying out some research with individuals who have Duchenne Muscular Dystrophy and primary caregivers of individuals with Duchenne. We are looking to discuss the caregiver and patient perspectives of completing the North Star Ambulatory Assessment (NSAA) or Performance of Upper Limb (PUL) test, which are typically carried out during clinic appointments or clinical trials to measure and track muscle function. We are interested in understanding what scores on these instruments mean to you and your daily life.
Your input will help researchers decide how to measure outcomes in future clinical trials of treatments for Duchenne. The intent is to publish this research so the general and scientific community can learn more about the real-life impact Duchenne has on people’s lives.
This study is being conducted by researchers from Modus Outcomes, a division of THREAD Research. Modus Outcomes specializes in developing patient-centred outcome measures, and all researchers are fully trained in qualitative interviewing.
We are looking for individuals and caregivers who fit the following criteria:
- Individuals who have a diagnosis of Duchenne Muscular Dystrophy, and:
- Are 13 years or older
- If the patient is aged 13-17, they must have an adult who is able to be present during the entirety of the interview
- Are male
- Regularly complete the NSAA or the PUL
- Know their most recent NSAA / PUL score and date completed, or be able to access it and willing to provide it (may require you to contact your clinic or doctor/physiotherapist to obtain your most recent score)
- Are 13 years or older
- Caregivers must be a primary caregiver of a patient with Duchenne Muscular Dystrophy and:
- Are 18 years or older
- Care for an individual over the age of 4 years old
- Know the individual’s most recent NSAA or PUL score, and the date it was completed, or be able to access it and willing to provide it (may require you to contact your clinic or doctor/physiotherapist to obtain your son’s most recent score)
Individuals will be excluded if they, or the individual they care for, are enrolled in a current therapeutic clinical trial.
The research will involve 60-minute audio and/or video-recorded telephone interview in which we would like to hear your feedback on your experience with the NSAA or PUL.
In appreciation of your time, an honorarium of $125 CAD will be provided.
If you are interested in participating in this interview study or require further information, please contact Gerrit Vandenberg at [email protected].