Advancing Data Collaboration in Rare Disease and Epilepsy Research

This webinar brought together key voices in epilepsy patient advocacy, data science, and medical research to explore novel ways we can simplify research data management and improve outcomes for patients.

02:12 Dr. Sam Volchenboum, pediatric oncologist and Director of Data for the Common Good, introduces D4CG's methods for uniting data and community-driven approaches to push forward meaningful progress in rare disease research.

32:49 CALL TO ACTION: We are looking for collaborators!

36:06 Dr. Justin West, Co-Founder, President, and Director of Clinical Medicine for the KCNT1 Epilepsy Foundation, offers perspective driven by his expertise as a physician and his experience as a father of three, including his son Andrew who was diagnosed with KCNT1 related epilepsy at nine months of age.

51:24 Dr. Doug Nordli, renowned pediatric epileptologist, shares insights on the use of EEGs as biomarkers for cognition and their critical role in understanding and treating epilepsy.

1:20:49 Dr. Lawrence Hunter, widely recognized as one of the founders of bioinformatics, discusses his new project to quantify and identify statements of desired knowledge from biomedical literature in the epilepsy research space.

1:33:38 Q&A Panel with Drs. Volchenboum, West, Nordli, and Hunter

2:00:05 Dr. Robert Califf, Commissioner of the Food and Drug Administration, shares remarks on the importance of this work.