Due Date: 10/22/20
Funder: Michael J. Fox Foundation
About the Michael J. Fox Foundation
The Michael J. Fox Foundation (MJFF) exists for one reason: to accelerate the next generation of Parkinson’s disease (PD) treatments. In practice, that means identifying and funding projects most vital to patients; spearheading solutions around seemingly intractable field-wide challenges; coordinating and streamlining the efforts of multiple, often disparate, teams; and doing whatever it takes to drive faster knowledge turns for the benefit of every life touched by PD.
In principle, it means leveraging their core values of urgency, optimism, efficiency, accountability, and persistence in problem-solving to work on behalf of the 6 million people worldwide living with Parkinson’s.
About Fox Insight
Fox Insight is an online, longitudinal study of people with and without Parkinson’s. The study collects self-reported health, patient preference, and lifestyle information; patient-reported outcomes (PROs); and genetic data with the goal of better understanding the disease. Fox Insight assessments include validated scales and novel survey instruments, which are detailed in the Fox Insight Data Exploration Network (Fox DEN).
With nearly 50,000 participants consented and enrollment ongoing, Fox Insight is the largest global Parkinson’s cohort and a unique real-world dataset. Individuals over the age of 18 with internet access and the ability to complete assessments in English are eligible to participate. The study cohort is approximately 72% of people with Parkinson’s with a mean age of 65 and mean Parkinson’s diagnosis duration of 6.61 years. The Fox DEN platform provides investigators a tool to explore, download, and apply statistical models on data collected from volunteers in the Fox Insight study. Data are open access and investigators are encouraged to request access through Fox DEN and explore the dataset before applying to the Request for Applications (RFA).
About the Opportunity
This RFA aims to understand how PROs and other volunteer contributed data in Fox Insight can contribute to a better understanding of Parkinson’s and inform therapeutic development, clinical care, and public policy. The Fox Insight dataset includes cross-sectional and longitudinal data from people with and without Parkinson’s as well as genetic data collected by 23andMe on a subset of the Parkinson’s cohort. The scale of volunteers contributing data to Fox Insight provides unprecedented power to translate patient experience into research insights, and this RFA aims to support diverse research teams to extract learnings from the community of Fox Insight participants.
While MJFF encourages investigators with diverse research expertise to apply, applicants with Parkinson’s experience will be at an advantage. Study leadership and MJFF can be available to consult with applicants without Parkinson’s expertise during proposal development and, if funded by MJFF, throughout the project.
Applicants should focus on analyses that achieve one or more of the following goals:
- Characterize disease progression for people with Parkinson’s.
- Evaluate the utility of different instruments and/or instrument sub-items in measuring burden of disease, especially in individuals within the first two (2) years of Parkinson’s diagnosis.
- Identify the role of pharmacological, medical device, and/or non-medical interventions on managing Parkinson’s symptoms and long-term health outcomes.
- Predict the future health status of participants without Parkinson’s based on Parkinson’s risk variables and model their likelihood of developing Parkinson’s.
- Determine elements of disease experience that drive patient preference and risk tolerance.
- Determine how economic factors, patient-physician communication, and lifestyle factors influence people with Parkinson’s medical treatment and long-term health outcomes.
- Explore the factors that affect volunteer compliance and completeness of participation in an online study.
- Analyst-choice: Researchers can submit their own analysis topics based on available Fox Insight data especially as it relates to longitudinal analyses.
Applications may be submitted by researchers or clinicians in:
- U.S. and non-U.S. biotechnology/pharmaceutical companies, or other publicly or privately held for-profit entities
- U.S. and non-U.S. public and private non-profit entities, such as universities, colleges, hospitals, laboratories, units of state and local governments, and eligible agencies of the federal government
Pre-proposals are due October 22, 2020.