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Participate in PPMI: Focus on Genetics

Over the past decade, studies of the genetics of Parkinson’s disease have revolutionized the pursuit of a “disease-modifying” treatment — a therapy that can slow or stop the progression of PD. Studying people with Parkinson’s and their families is essential to help researchers identify genetic traits that may contribute to the onset and progression of PD.

The Parkinson's Progression Markers Initiative (PPMI) is The Michael J. Fox Foundation's flagship biomarkers study seeking to learn more about the genetics of Parkinson's disease. PPMI is currently studying the connection between PD and having a mutation in the LRRK2 gene — the single most common genetic contributor to PD.

 

How you can participate

Whether you have PD or not, you may be eligible to receive genetic counseling and testing at no cost to determine if you qualify to participate in PPMI.

NEVER BEEN GENETICALLY TESTED?

PPMI is seeking individuals who meet either of the following criteria:

  • People with Parkinson's who are of Eastern European (Ashkenazi) Jewish, North African Berber, or Basque ancestry.
  • Individuals without PD who are related to someone with PD AND who are of Eastern European (Ashkenazi) Jewish, North African Berber, or Basque ancestry.

Have you already been tested?

If you know you have a LRRK2 mutation:

Select PPMI sites are also studying the connection between Parkinson’s and the SNCA gene. If you have been tested and know that you have a mutation in your SNCA gene, contact a PPMI site.

 

Learn More About the Genetic Testing Process in PPMI

Preparation: Talking to a genetic counselor about the process is an important first step. Together, you’ll discuss family history, motivations for getting tested, possible outcomes, and whether you’ll decide to know the results of your test.

The Test: A genetic test can require a saliva test or a single blood draw to determine whether or not there is a mutation in your LRRK2 gene. Your sample will be sent to a central PPMI laboratory for testing.

Receiving Your Results: You will be contacted by a PPMI representative once your results are in. All volunteers will be invited for further genetic counseling at no cost and some may be invited to participate in additional tests and evaluations.

If you are interested in receiving free genetic counseling and testing for a LRRK2 mutation for the purposes of participating in PPMI, fill out our questionnaire or call (888) 830-6299.

Need more info?

Learn more about PPMI genetics by calling (888) 830-6299.

WATCH: The Parkinson’s Minute on PD Genetics

 

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