Case Study - Black and African Americans Connections to Parkinson’s Disease

Key Takeaways

The Michael J. Fox Foundation engaged BBK Worldwide to assist in developing patient recruitment materials for the Black and African Americans’ Connections to Parkinson’s Disease (BLAAC PD) study. The study was being conducted as part of the Global Parkinson’s Genetics Program — an initiative focused on changing the landscape by deciphering the genetic architecture of Parkinson's disease in traditionally underserved populations.

The BLAAC PD study was recruiting 2,000 Black and African Americans with Parkinson’s Disease (including familial / sporadic Parkinson’s disease cases or individuals with atypical parkinsonism) and 3,000 healthy subjects from across North America.

Challenges

African Americans are less likely to be diagnosed with Parkinson’s disease, more likely to have delays in diagnosis, and, once diagnosed, are undertreated when compared with white patients.

Longstanding issues of trust regarding clinical research among the Black and African American community created a barrier for engagement.

Parkinson’s disease research has not historically focused on the Black and African American community, therefore introducing the study opportunity required education about clinical trial participation in addition to study-specific information.

Solutions

Create patient-facing materials that present Black and African Americans as partners in research to increase interest in the GP2 BLAAC PD study.

Convey the value of participating in the study and how participants can help scientists learn more about genes linked to Parkinson’s disease.

Capitalize on the site’s existing relationships with patients by providing tools that support staff in connecting with potential participants about the study opportunity.