Designing the Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease study

Background Population reflective research enrollment improves study generalizability and disease knowledge. Nevertheless, the proportion of underrepresented groups (URGs) in Parkinson's disease (PD) research remains low. Hence, the current manuscript describes the process of designing a study to analyze the effectiveness of strategies to overcome barriers to URG recruitment in PD research. Methods The Fostering Inclusivity in Research Engagement for Underrepresented Populations in Parkinson's Disease (FIRE-UP PD) study asked participating sites to identify a URG or geographical region to target to assess knowledge and attitudes toward PD research as well as increase Fox Insight (an online study with The Michael J. Fox Foundation) participation across eight months. URGs were defined as racial and ethnic minorities, women, rural populations, and low socioeconomic status groups. Participating sites were paired based on their proposed interventions and were randomly assigned to either the intervention or control condition. Results The FIRE-UP PD study was divided into pre-intervention, intervention, and post-intervention periods to measure changes in awareness and trust in PD research along with engagement and interest in PD protocols through the use of several surveys. Interventions included developing educational tools to engage local communities, building partnerships within local PD communities, and recruiting stakeholders to reimagine medical and research information for the community. Conclusion Improving representation in research is a crucial step toward improving access to PD diagnoses and treatments. This is one of the first multi-site PD research studies to include community engagement to address barriers to research participation and improve research recruitment of URGs. Author Affiliation: (a) Massachusetts General Hospital, 55 Fruit St, Boston, MA 02114, United States of America (b) Harvard Medical School, 25 Shattuck St, Boston, MA 02115, United States of America (c) Perelman School of Medicine at the University of Pennsylvania, 3400 Civic Center Blvd, Philadelphia, PA 19104, United States of America (d) The Michael J. Fox Foundation, 111 W. 33rd St, New York City, NY, United States of America * Corresponding author at: 50 Staniford St, Boston, MA 02114, Floor 10, United States of America. Article History: Received 17 August 2021; Revised 20 January 2022; Accepted 17 February 2022 Byline: Angie V. Sanchez [asanchez27@mgh.harvard.edu] (a,b,*), Juliana M. Ison (a), Helen Hemley (a), Allison Willis (c), Bernadette Siddiqi (d), Eric A. Macklin (a,b), Christine Ulysse (a), Marissa Reynolds (a), Michael A. Schwarzschild (a,b), Jonathan D. Jackson (a,b)