We invite you to participate in our patient experience research studies
Patient experience research studies are non-interventional because they do not involve treatment or medicine. These studies provide an opportunity for people living with LGMD to share their unique experiences and perspectives.
Currently Recruiting Research Studies:
Why Participate?
When you participate in patient experience research studies, such as interviews and surveys, you are contributing to research that helps people understand the impact of LGMDs on daily life and what matters to people living with an LGMD.
The specific objectives and requirements of each study may vary. Depending on eligibility criteria, you may be able to participate in multiple patient experience studies. Participation in these studies will not affect your ability to be part of a clinical trial.
Each study aims to provide valuable insights and your input can help healthcare professionals and researchers to:
- Support clinical research decisions, such as by informing clinical trial design based on lived experiences and preferences of individuals
- Advance drug development for researchers and regulators, who often rely on patient-reported data to make decisions regarding drug development
- Evaluate the patient’s perspective of current disease management and assess the impact of potential interventions to help enable better patient-centric care
Below are answers to some questions you may have about the study opportunities. If you have additional questions, please contact our Patient Affairs team at Advocacy@Sarepta.com.
Can I participate in more than one study, if I’m eligible?
Eligibility is dependent on each study. Please refer to the details and contact information for each study to learn more.
I’m currently participating in Sarepta’s natural history study, JOURNEY. Am I eligible to participate in the non-interventional research studies?
Eligibility is dependent on the study.
Unfortunately, if you are a part of the Sarepta JOURNEY natural history study, you are not eligible to participate in the medical chart review study as similar information is collected from JOURNEY. We appreciate your time and interest.
Will any of the studies require travel?
No, the studies are online-based and/or can be completed from home.