Dravet Syndrome Foundation (DSF) has developed a webinar because there is an increasing recognition of the importance of the involvement of patients in the development of research that will impact their disease state.
In 2018, DSF, received a generous grant from the Patient Centered Outcomes Research Institute (PCORI) to help us better educate and assemble our community to assure that we are research-ready and that the patient voice is an active part of identifying our community’s research needs and development.
The presentation was led by Nicole Villas, M Ed, DSF Scientific Director and Board President, on June 25, 2019. Topics discussed include:
- What is patient-centered outcomes research/comparative effective research
- The importance of an engaged community
- Making PCOR meaningful in Dravet syndrome
- What are the next steps to participate
This webinar can be viewed here and will be available in Spanish soon.