MJFF is developing tools to collect data (with varying frequency) to be pooled and shared with researchers. We see the greatest value in patient profiles that link genotypic information with phenotypic information (especially objective data that reflects disease variability, on and off meds overtime). We believe this data will be of great value to patients and their physicians for disease management and we know it will be transform our understanding of risk factors and disease course of PD. Which is ultimately needed to develop better treatments for all aspects of PD.

We are working on tools where data would complement detailed profiles (dna, patient histories, medications, symptoms etc) to provide a complete picture and we are counting on the fact that patients will be willing play the pivotal role in providing these data.

We also know that data privacy, data integrity, data access, and data sharing requirements for such a project are non-trivial. Stay tuned as this project rolls out in 2014 as an adjunct to Fox Trial Finder.

Debi

PS: If you haven't created a patient profile in our online clinical trial matching tool, Fox Trial Finder, please check it out. www.foxtrialfinder.org