Duchenne Community Advisory Board (CAB)
The Duchenne CAB is an independent, autonomous and international board of trained patient representatives (parents) from 12 different countries across the world. Patient experts from the World Duchenne Organization member organizations empower the Board.
It meets bi-annually in Amsterdam (or virtually) after initiating a call of interest. Following the call of interest, an invitation is extended to the company for an individualized session. In addition, upon prior agreement, ad hoc advice is available based on specific urgent questions or issues.
Duchenne CAB provides collective knowledge and expertise
The goal of the Duchenne CAB is to provide its collective knowledge and expertise in a common endeavor to accelerate research, development, clinical trials and access to effective treatments for DMD worldwide.
Consulting with the Duchenne CAB provides certain benefits:
- Attaining first-hand knowledge of living with DMD;
- Gaining insights into patient needs and preferences;
- Receiving unbiased advice in order to design optimal and meaningful clinical trials that better fit patient needs, thereby improving recruitment, adherence and retention.
The core elements are absolute confidentiality to promote:
- TRUST between all participants and provide a safe harbor for meaningful interaction
- TRANSPARENCY to guarantee impartiality and integrity to enable maximization of the value and impact of insights and advice given to our industry partners
- EXCHANGE of ideas, knowledge, best practices and data sharing to accelerate drug development in DMD, optimize research and development and ensure optimal, meaningful and successful trials
- ACTION PLAN to streamline cooperation between stakeholders, de-risk development and decrease cost from basic research to clinical trials, market approval, and access and reimbursement in a global environment.
Reports of the meetings can be found here:
- June 2023
- October 2022
- May 2022
- September – November 2021
- April – July 2021
- October 2020
- May 2020
- October 2019
- May 2019
For questions and inquiries on the program, please contact the Coordinator, Sally Hofmeister: [email protected]