I agree the need for continued rethinking of ways to increase the productivity of science -- particularly in how/what it delivers for patients --- must continue. At MJFF we have been active in putting forth new mechanisms for improving this process (funding high-risk research, crafting unlikely partnerships, inserting a robust patient voice, building/distributing field-wide tools) including building portals for sharing data.

Some exciting examples are already active such as the extensive data being collected from PD patients and controls for the PPMI biomarker initiative. Many of you know that the study has been underway for about 2 years now and the data collected has been available for 18 months already and will continue to grow as the study continues. Over 40,000 data downloads have already occurred and dozens of scientists have applied for access to the biospecimens as well. Findings are already in press. So, very exciting to see this data shared globally. You can check out the data portal at www.ppmi-info.org.

Some of our programs focus on sharing other key tools for research (not exactly data sharing but of critical value to speeding research process too). For instance, several years ago we stopped funding the creation of pre-clinical models at academic labs given the challenges we encountered in getting the models out to other research colleagues. We now spend millions a year on creating and distributing such tools (not just animals but assays, vectors etc). All we ask when we share is that researchers post their findings about the utility/functionality of the tools on our web site so other researchers can benefit...kind of like crowd sourcing opinions about the best/most valid tools. This has been a win win for everyone (except maybe the tech transfer offices at Universities).

Our Fox Trial Finder tool collects self-reported phenotypic data from patients to facilitate suitable matches for clinical trials. We are currently expanding on this tool working to add features that help patients store disease management data to share with their physicians that can also enhance their profiles for clinical study participation. This is a big area for growth at MJFF in 2013. And, as envisioned, provides a platform for capturing patient contributed data---going far beyond what is typically collected by physicians today --- more to come on these enhancements as they roll out this year. This has been a very active area of input from our patient council (22 members strong -- from regions throughout the US plus one Canadian).

Another example might be the data challenge/prize we launched last week "Predicting Parkinson's Disease Progression with Smartphone Data" that has already been discussed in previous threads... this is a pilot for better understanding how researchers can be attracted to use data we already have...it is (hopefully!) a way for us to bridge data sources and uses. (PS in three weeks' time we've already seen 435 downloads from 18 countries --- with the deadline is still 28 days away ... citizen researchers welcome!)

Overall we see many folks thinking big in this area and have worked to understand the best possible applications to PD. Very exciting times indeed and many challenges too. Conductor reiterates an important message for patients who can contribute data/participate in studies...you are a crucial part of the solution. We are working on more and more ways to engage patients to contribute data into the research process...stay tuned!

Best, Debi