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.


Devra Densmore

Principal Consultant, Elevate Advocacy


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