Dravet Syndrome Voice of the Patient Report

DSF has released its Dravet Syndrome Voice of the Patient report, summarizing outcomes from a February 2022 Externally Led Patient Focused Drug Development (EL-PFDD) meeting. For the first time ever, parent caregivers and family members were able to share the lived experience of patients living with Dravet syndrome. Parent caregivers and family members shared riveting stories of symptom burdens, challenges of managing the disease, associated health comorbidities, and treatment needs and expectations with U.S Food and Drug Administration (FDA) regulators, drug developers, researchers, and clinicians.The meeting was recorded and is available for viewing on our website at www.Dravet-EL-PFDD.org


The Dravet Syndrome Voice of the Parent report is a comprehensive document created from the feedback gathered at the Dravet syndrome EL-PFDD meeting. It includes shared testimony and data from attendees who participated via webcast, as well as submitted comments before and after the meeting. The report also includes the results of a survey that was promoted concurrently with the EL-PFDD meeting process detailing the preferences of 114 caregivers regarding disease modifying therapies for Dravet syndrome 


The report will inform the plans and programs of the Dravet Syndrome Foundation and sponsors developing new treatment therapies. The report has been submitted to FDA and will serve as a lasting resource for regulators, life science companies, researchers, the patient community, and the public.


Veronica Hood, PhD, DSF Scientific Director stated, “DSF is proud to have led this effort to ensure that the patient voice can be actively incorporated into the drug development and approval process. The Voice of the Patient report enables any of the stakeholders involved in this process to easily identify the top needs of patients and families and to better understand the priorities of this population in regards to treatment options.”  


DSF thanks the DSF staff who developed the meeting content and agenda, with assistance from consulting partners James Valentine, Esq. and Larry Bauer, RN, MA, from Hyman, Phelps & McNamara, P.C. To read the report or watch the recorded meeting, visit www.Dravet-EF-PFDD.org.

Voice of the patient report sponsors
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