To Top

Dec. 17, 2021


The Importance of Patient Voices and Data Analytics

Posted by Maia Craig

NORD, in partnership with the Critical Path Institute (C-Path) is proud to announce a two-part video series on patient-focused drug development (PFDD) as part of our Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP) initiative.  

The first video, What is Patient-Focused Drug Development (PFDD)?, provides a brief explanation of what patient-focused drug development is and how the patient voice is incorporated into regulatory decision making on drug development. The second video, How Will RDCA-DAP® Support Patient-Focused Drug Development?, explains how the RDCA-DAP can support PFDD and help to ensure that patient voices are heard in rare disease research. 

The video series aims to paint a picture of the current research environment and showcase how patients and caregivers can become involved in and support research that could have life-changing or even life-saving outcomes for families like theirs. The videos explain how RDCA-DAP can accelerate development of treatments, and how patients and caregivers can support this process by joining with others to share data in registries and natural history studies.  

RDCA-DAP® is fully funded with a federal grant awarded to the Critical Path Institute.