Tuesday, March 28, 2023
Time: 10:00-11:00 AM EST
Join leaders in the research, patient advocacy, and clinical design fields as they discuss how sponsors can leverage or develop outcomes measures that demonstrate value in rare disease clinical research. The importance of clinical data, electronic medical records, registrational data and patient reported outcomes will be explored, including the intersectionality between what matters to patients and to regulatory bodies.
Moderator:
Devra Densmore
Principal Consultant, Elevate Advocacy
Panelists:
Gabrielle Conecker
Executive Director and Co-Founder, Decoding Developmental Epilepsies
Nasha Fitter
Cofounder and CEO, FOXG1 Research Foundation and VP, Patient Network & Data, Invitae
Tjitske Kleefstra
Professor, Radboudumc Nijmegen and ErasmusMC, Rotterdam, The Netherlands
Pat Koochaki
Principal, Patient Centered Outcomes, ICON plc
Tanja Zdolsek
Researcher and Project Manager, Jožef Stefan Institute & Founder and leader, IDefine Europe