The Michael J. Fox Foundation for Parkinson’s Disease Research
Fox Insight Online Study
Fox Insight (www.foxinsight.org) is a dynamic online clinical study sponsored by The Michael J. Fox Foundation (MJFF) where more than 45,000 people with Parkinson disease (PD) and control volunteers contribute data about their experiences and treatment through questionnaires and surveys. The study also allows participants with PD in the United States to add their genetic data to the study through a collaboration with 23andMe. Fox Insight data are de-identified and made available to qualified researchers worldwide at
Grey Matter Technologies customized the Parkinson Disease Patient Report of Problems (PD-PROP™) questionnaire for data capture through Fox Insight and initiated the project in March 2017.
More than 22,000 keyboard-entered PD-PROP™ reports (about 80,000 problems) have been captured as of December 2019, including about 12,000 longitudinal reports spanning up to two years of follow-up.
The poster “Cross-sectional Patient-Reported Natural History of PD” was presented at peer-reviewed scientific symposia in 2018 and 2019.
A voice-capture pilot study with Fox Insight participants began in 2018.
We are actively leveraging our early success in gathering and analyzing
PD-PROP™ data with MJFF to collaborate with industry and other patient-oriented foundations to expand PROP™ applications and data. We are also planning pilot studies to examine the utility of our tools in clinical practice.
Jazz Pharmaceuticals, Dublin, Ireland
Jazz Pharmaceuticals plc (Nasdaq: JAZZ) is a global biopharmaceutical company dedicated to developing life-changing medicines for people with serious diseases — often with limited or no options.
We have a diverse portfolio of marketed medicines and novel product candidates, from early- to late-stage development, in key therapeutic areas. Our focus is in neuroscience, including sleep medicine and movement disorders, and in oncology, including hematologic and solid tumors.
To this end, Jazz has engaged Grey Matter Technologies to seek input from participants in certain Jazz clinical studies to better understand their disease burden and to use that information in the design of future studies.
Biogen Inc, Cambridge, MA
Biogen Inc (NASDAQ: BIIB) discovers, develops, and delivers worldwide innovative therapies for people living with serious neurological and neurodegenerative diseases as well as related therapeutic adjacencies.
Biogen has entered into a collaboration with Grey Matter Technologies to better understand the PD-PROP™ responses of PD Fox Insight research participants, especially in the context of individuals who have chosen to learn their genetic carrier status. Data are being examined cross-sectionally and longitudinally.
The findings from this research collaboration are intended to inform the development of clinical outcome assessments and potential clinical trial endpoints in PD and its genetic influences.
Huntington Study Group
The mission of the The Huntington Study Group (HSG) is seeking treatments that make a difference for those affected by HD. HSG is a world leader in planning, designing, conducting, analyzing and reporting high-quality clinical research trials and studies in Huntington disease (HD), a chronic neurodegenerative disease, affecting about 30,000 patients in North America and an additional 90,000 individuals at direct genetic risk for HD.
Grey MatterTechnologies is working with the HSG to develop the HD-PROP as core content for its new online platform, myHDstory, along with other content that will capture what people affected by HD report. In turn, these data will be shared with researchers to develop patient-reported clinical outcome assessments, and enrichment tools and endpoints for clinical trials.