Until recently, Parkinson’s genetic research had knowledge gaps in how the disease presents and progresses across a range of communities. The 10-year Global Parkinson’s Genetics Program (GP2) seeks to address this by enrolling study participants worldwide. Supported through GP2, a collaborative initiative funded by Aligning Science Across Parkinson’s and implemented in partnership with The Michael J. Fox Foundation for Parkinson’s Research, the initiative chose NORC at the University of Chicago to help GP2’s U.S. sites recruit Black and African American (BAA) adults. This effort was part of GP2’s Black and African American Connections to Parkinson’s Disease (BLAAC PD) study, which is investigating the genetic architecture underlying Parkinson’s risk and progression in these populations.

Our team’s over 50 years of combined experience in public health, community-engaged research, patient-centered outcomes research, culturally responsive research, and the design and leadership of learning networks helped equip 12 study sites with tools for training, recruitment, and community outreach and engagement.

Both of us began our careers as community organizers—learning to listen carefully, ask hard questions in complex settings, and build the relationships and trust necessary for people to work toward shared goals. This is not incidental to what we do now. It is the root of it. And NORC provides us with the institutional infrastructure to deploy those skills at scale. 

Our work with The Michael J. Fox Foundation (MJFF) began in 2022, with Carly facilitating an advisory board meeting for the Foundation. This work led to the discovery of similar underlying philosophies and recognition that GP2’s U.S. study sites could benefit from our support. What followed was an evolving scope of work across several years.

In close collaboration with MJFF and GP2 study teams, NORC developed a culturally appropriate training and technical assistance (TTA) model for the BLAAC PD study, which acknowledged that recruiting Black and African American adults into clinical genetic research requires a sensitive, culturally responsive approach. We equipped 12 U.S. study sites with the tools, knowledge, and confidence to navigate the complexities of community-engaged and clinical research in this population.

This purposefully designed TTA approach enabled BLAAC PD study sites to learn from one another and strengthen strategies to engage and recruit people into Parkinson’s research. By intentionally focusing on trust, group dynamics, and facilitation, we helped to establish a community of practice, and sites began sharing approaches, troubleshooting challenges, and learning together beyond formal NORC‑facilitated sessions.

This collaboration was not incidental. It was the result of a four-pronged design anchored in a novel best practices compendium:

• Co-Learning Forums. Held quarterly, these enabled multidirectional learning. They began with foundational topics in community-engaged research in BAA communities—such as communication and media outreach—and progressed to genetic testing, counseling, and meaningful recruitment strategies. Over time, sites became presenters, panelists, and peer experts. By the end of the project, sites were teaching each other.
• Office Hours. Monthly sessions fostered focused, peer-driven problem-solving, allowing sites to surface challenges and discover how others were navigating similar terrain. Topics were seeded in advance but guided by sites’ real-time needs, creating a steady rhythm of contact and accountability.
• One-on-One Technical Assistance. Individualized consultation was particularly valuable given that sites entered the study with varying levels of experience in community-engaged research. While some teams brought deep experience working with BAA communities, others were developing their approach and strategy. We equipped sites with practical language, modeling, and frameworks to engage with cultural competence and genuine respect.
• A Living Roadmap. More than a static guide, we developed a continuously evolving roadmap, initially based on a literature review, and refined and routinely updated with content and insights from co-learning forums and office-hours discussions. This approach grounded the roadmap in sites’ real-world experiences. This collection of best practices is the first of its kind in Parkinson’s disease research.

We listened to what study teams shared about facilitators and barriers to engagement and recruitment. We listened to what they said about administrative burdens. We listened to what they shared about recruiting in communities to which they did not personally belong.

From that listening, we charted a path forward emphasizing one core principle: effective engagement requires knowing what you do not know, and recognizing when to ask for guidance, especially with respect to the lived experiences of communities outside of one’s own.

Across 65 technical assistance sessions, 30 monthly office hours, and 12 quarterly co-learning forums, we helped the BLAAC PD study meet its goals and create a thriving community of practice.

This work sets an important precedent by providing a model that is readily transferable to other studies and topic areas. Our work is now reaching a broader audience through our recently published article in the Journal of Parkinson’s Disease.