Role of Patients in Research
Patients play a crucial role in research by advancing understanding of Dravet syndrome, highlighting unmet needs, driving the development of treatments with meaningful outcomes, and enhancing overall quality of life.
Their contribution extends well beyond participation in clinical trials, as they offer unique perspectives, lived experiences, and a human-centered viewpoint that enrich the quality and relevance of research. Discover how your participation in research plays a crucial role in advancing progress for Dravet syndrome.

Importance of Research
Basic and clinical research continue to improve outcomes for individuals with Dravet syndrome. When DSF was founded, there were no specific treatments for Dravet syndrome and research studies were still limited. The breadth and depth of research knowledge has significantly expanded since that time, further stimulating additional research efforts and leading to improved clinical care for patients.

Patient Centered Research
Patient-Centered Outcomes Research (PCOR) is research that provides patients and their clinicians with evidence-based information in order to help them make more informed health care decisions and allowing them to express what is most important to them. This research is designed to answer questions about the potential benefits and harms of different care options, given a patient’s personal characteristics, conditions, and preferences.