Fox Insight is an online clinical study that surveys over 25,000 people with Parkinson disease (PD) about their overall health, symptoms and well-being. Unfortunately, certain groups of individuals — such as people of color and low-income patients — have been found to be less likely to participate in research studies overall. Such underrepresentation could mean that the volunteers in Fox Insight may not reflect the health of people with PD as a whole and may falsely suggest these individuals are healthier than they actually are.
We hypothesize that giving underrepresented groups greater weight when analyzing questionnaire data will provide a clearer picture of PD-related health in the United States.
We will use data from existing studies to build a “virtual census” of the population of people with PD in the U.S. We will then compare participants in the Fox Insight study to our virtual census to determine the extent to which the Fox Insight study represents the health of the general Parkinson’s population in the U.S. Finally, by analyzing Fox Insight data using special statistical methods that take these differences into account, we will calculate the number of people in the U.S. who have specific motor and non-motor symptoms of PD.
Impact on Diagnosis/Treatment of Parkinson’s Disease:
Our results will provide a clearer picture of the public health impact of PD and ensure that individuals experiencing PD symptoms have access to the proper treatment. Such methods can also be applied to the analysis of clinical trial results.
Next Steps for Development:
As Fox Insight and other studies increase recruitment of underrepresented groups, we can apply the virtual census and statistical methods used in this project to follow their progress and to ensure that the results of future research studies accurately reflect the Parkinson’s community as a whole.