Recruitment Support for the BLAAC PD Study

Recruitment and Community Engagement Support for the Black and African American Connections to Parkinson's Disease Project

Funder

This project was supported by the Global Parkinson’s Genetics Program (GP2). GP2 is funded by the Aligning Science Across Parkinson’s (ASAP) initiative and implemented by The Michael J. Fox Foundation for Parkinson’s Research.
Dates

October 2022 - Ongoing

Problem

Overview:

Project Description: NORC is supporting the Michael J. Fox Foundation for Parkinson’s Research in its recruitment and community engagement efforts for the Black and African American Connections to Parkinson’s Disease (BLAAC PD) study, funded by Aligning Science Across Parkinson’s. Part of the Global Parkinson’s Genetics Program (GP2), the BLAAC PD program is recruiting Black and African American adults with and without Parkinson’s disease across the United States to transform the understanding of Parkinson’s genetics. NORC supports this work by providing cross-site training/technical assistance (TTA) and facilitating co-learning forums to support recruitment efforts and promote community-engaged research across six BLAAC PD study sites. As part of this work, NORC has also created a roadmap of best practices intended to mutually and iteratively document best practices for recruitment into the BLAAC PD study. The roadmap synthesizes and shares a collection of best recruitment and engagement practices from the literature, subject matter experts, and community experience, to produce a living document that can evolve during the course of the BLAAC PD project. 

Solution

Global Parkinson’s Genetics Program (GP2):

The Global Parkinson’s Genetics Program (GP2) is a large, five-year genetics study partnering with cohorts around the world to collect and genotype samples from over 150,000 volunteers – both individuals with Parkinson’s diseases and controls – to further understand the genetic architecture of Parkinson’s disease. The program funds and coordinates contributions across nearly 120 cohort studies in 52 unique locations covering six continents.

Result

Black and African American Connections to Parkinson’s Disease (BLAAC PD)

The Black and African American Connections to Parkinson’s Disease (BLAAC PD) study aims to increase representation of Black and African American individuals in Parkinson’s disease (PD) research. Learnings from this underrepresented community have the potential to inform therapeutic development and care practices benefitting Black and African American populations, as well as broader Parkinson’s populations. As a flagship project of the Global Parkinson’s Program (GP2), BLAAC PD aims to partner with 2,000 Black and African people with PD and 2,000 control volunteers to gather and analyze blood and saliva samples to better understand the genetics of PD in this community.