Clinical Research Alert: Observational Study on Parent and Caregiver Perspectives on Adherence to DMD Care

Researchers at Albany Medical College are seeking parents and caregivers of children with Duchenne muscular dystrophy (DMD) to participate in an observational REDCap survey about their adherence to DMD care guidelines and challenges and priorities in managing their child’s care in the United States. The findings of this survey will help to better understand the experiences of parents and caregivers of individuals with DMD.

The study

This observational study consists of a one-time online survey that takes approximately 10-15 minutes to complete. Participants will be asked to submit responses electronically via REDCap. Responses will be fully de-identified. The participant’s decision to participate or not will have no impact on the medical care their child receives.

The survey will include questions to assess (1) parent/caregiver and child demographics, (2) information and resources offered to parent/caregiver at time of child’s diagnosis, (3) child’s current clinical status, (4) child’s adherence to specialist visits and maintenance care guidelines, (5) parent/caregiver priorities for care improvement, (6) parent/caregiver satisfaction with their child’s care, and (7) resources that parent/caregivers may find helpful to enhance their child’s care.

Study criteria

To be eligible for the research study, individuals must meet the following inclusion criteria:

• Be at least 18 years of age;
• Be able to speak, read, write, and understand English;
• Be a parent or caregiver of a child with DMD (child can be of any age)

Interested in participating?

To learn more or to participate in the study, please click here:

https://redcap.amc.edu/surveys/?s=HLJYYRHH79JTNHHR.

For any inquiries, contact the study coordinator Michelle Tram by email at trammi@amc.edu.