Addressing the Complexities of Duchenne (PPMD 2019 Conference)
Addressing the Complexities of Duchenne – What You Should Know
Moderator: Anessa Fehsenfeld
- 0:10 – Attacking Duchenne from Every Angle – Anessa Fehsenfeld, PPMD Chairman
- 3:40 – Duchenne Research and Clinical Trials – Abby Bronson
- Current therapeutic approaches and clinical trials
- Strategies to accelerate the process
- 4:00 – Working to Facilitate a Favorable Access Environment – Annie Kennedy
- Influencing policy and infrastructure that drives Duchenne research, treatments, and access
- Producing evidence to reflect the Duchenne community’s experience to inform decision-making by all stakeholders within the access ecosystem
- 4:15 – Improvements in Care: Extending Quality of Life with a Focus on the Future – Kathi Kinnett
- The Certified Duchenne Care Center network accomplishments
- Integrating clinics, industry, and The Duchenne Registry to build a solid network
- 4:30 – The Patient Voice: Your Data Informing the Drug Development Ecosystem – Ryan Fischer
- Your preferences and participation drives innovation and change
- The Duchenne Registry and The Duchenne Outcomes Research Interchange
- 4:55p – POLLING QUESTIONS