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BLAAC PD Study Recruitment and Engagement Support

Male doctor and senior patient discussing scan results at the office.
Technical assistance for efforts to transform the understanding of Parkinson’s genetics
  • Funder
    Aligning Science Across Parkinson’s (ASAP)
  • Dates
    October 2022 – Ongoing

Challenge

Parkinson’s gene research has not involved many Black and African American people.  

Historically, genetic research on Parkinson’s disease has focused on people of European ancestry, leaving a significant knowledge gap about the disease in other populations. 

Solution

NORC is supporting the Black and African American Connections to Parkinson’s Disease (BLAAC PD) study . 

NORC is supporting recruitment and community engagement efforts for the Black and African American Connections to Parkinson’s Disease (BLAAC PD) study, funded by the Aligning Science Across Parkinson’s initiative and implemented by The Michael J. Fox Foundation. Part of the Global Parkinson’s Genetics Program (GP2), the BLAAC PD study 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 eleven 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 study. 

  • Global Parkinson’s Genetics Program (GP2): The Global Parkinson’s Genetics Program (GP2) is a large, 10-year genetics study partnering with cohorts around the world to collect and genotype samples from over 200,000 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 over 200 unique member cohorts covering six continents. 

  • 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), the BLAAC PD study aims to partner with 1,000 Black and African people with PD and 1,000 control volunteers to gather and analyze blood and saliva samples to better understand the genetics of PD in this community. 

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. See a complete list of GP2 members.

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