Parkinson’s disease is the second most common neurodegenerative disease in the United States.1 However, most of the research about Parkinson’s disease has been completed in white populations.
Genetic research (research that studies DNA) is a powerful tool in understanding how diseases develop, and in understanding possible treatments. Black and African American individuals are underrepresented in all genetics research; Parkinson’s disease research is no exception.2 It is time to close this gap in knowledge about how Parkinson’s disease develops in Black and African American populations.
The Black and African American Connections to Parkinson’s Disease (BLAAC-PD) project has a goal to accelerate Parkinson’s disease research in Black and African American populations.
Participation means agreeing to share health information and a saliva sample for research. You will receive a $25 gift card for your participation.
More information about the study can be found on our study flyer here.
Who is Eligible to Participate?
People with Kaiser Permanente insurance who identify as Black, African American, and/or Afro-Caribbean within one of these categories:
- Have Parkinson’s disease
- Do not have Parkinson’s disease
To participate or learn more, please email our study team at PDStudy@kp.org
Frequently Asked Questions
Will there be any costs to me?
There is no cost to you to participate in this study.
Will being in this study help me?
This study will not help you personally, but we hope the results of this study will help improve care for Black and African American patients with Parkinson’s disease in the future.
What will happen if I take part in this study?
If you join the study, we will review a consent form with you that covers the information below in more detail.
- If you do not have Parkinson’s disease, you will be asked to complete a brief health questionnaire and provide a saliva sample.
- If you do have Parkinson’s disease, you will be asked to complete a study visit (about 1 hour). During this visit, a doctor will review your health information. You will complete a health questionnaire and provide a saliva sample. A Neurologist and a member of the study team will conduct this visit.
If I take part in BLAAC-PD, can I join other clinical trials or studies too?
All researchers sign a confidentiality pledge that requires them to keep your information private. We will not use your name in study reports or in any transcripts (written records of what was said). Instead, we will label your responses with a code number only. We will not tell your healthcare providers about your participation in this study. We will not add information to your medical record.
Is this study a clinical trial?
No. This study is not a clinical trial.
BLAAC-PD will not provide you with personal health information or treatment options.
How will you protect my confidentiality?
All of the information you provide will be de-identified. This means your name and personal information will be replaced with a study number. Only de-identified information will be shared for research.
Do I have to be in this study?
No, being in this study is up to you. You are free to leave the study at any time later. Either way, there will be no penalty. Your decision won’t affect the health care you receive or the benefits that you are entitled to.
Jared Williamson
MAPRI Research Assistant
Learn More:
BLAAC-PD is part of the Global Parkinson’s Genetics Program (GP2). Learn more here:
References
- Prevalence of Parkinson’s disease across North America. Marras C, Beck JC, Bower JH, Roberts E, Ritz B, Ross GW, Abbott RD, Savica R, Van Den Eeden SK, Willis AW, Tanner CM, Parkinson’s Foundation P4 Group. NPJ Parkinsons Dis. 2018; 4():21.
- The Missing Diversity in Human Genetic Studies (cell.com)