Study Rationale: In recent years, scientists have learned that improving representation of all people in clinical research is an important way to fully understand diseases. This also ensures that new treatments work well for everyone. However, appropriate representation in clinical research for Parkinson’s disease (PD) has been difficult. The first phase of the FIRE-UP PD study examined whether it was possible to improve attitudes towards and recruitment to PD research for underrepresented populations. Despite clear gains in diverse recruitment, the principal limitation in the first phase of this study was our inability to concretely determine clear processes responsible for better study representation. There is also a need to better understand participant decision-making and how they may inform enrollment to PD research opportunities. Therefore, there is a need to continue the FIRE-UP PD study to investigate critical elements for diverse recruitment and to better understand patient level decisional stages in getting involved in research.
Hypothesis: This study will test new ideas to raise awareness of Parkinson’s research studies, particularly for, the Parkinson’s Progression Markers Initiative (PPMI) study. The study will focus on improving awareness and participation from groups and communities that are not often part of Parkinson’s research studies.
Study Design: We will conduct this study in eight movement and disorder clinics around the US. Four clinics will develop individual plans to raise awareness of the PPMI study to underrepresented patients and fellow neurologists. These will be compared to four clinics who simply display Fox Insight study materials in waiting rooms, which is often how clinical studies are advertised. After a six-month period, the four clinics with individual plans will be compared to one another, as well as to the four clinics who only displayed information in waiting rooms. Researchers will be looking at site-level and participant-level characteristics to enable broader generalizability of best practices for diverse, representative, inclusive engagement and recruitment to PD.
Impact on Diagnosis/Treatment of Parkinson’s disease: This study may help underrepresented groups access Parkinson’s research studies and results may have an impact beyond Parkinson’s research. Scientists believe that barriers preventing certain groups from participating in research are like barriers preventing those groups from timely diagnosis and treatment. Improving representation in Parkinson’s research is a key step towards improving access to Parkinson’s diagnosis and treatment for everyone.
Next Steps for Development: If the study succeeds, then the best solutions will be generalized and implemented in a larger number of movement and disorder clinics around the United State and Canada, ensuring that all Parkinson’s studies have appropriate representation from all populations.