CurePSP Genetics Program


The CurePSP Genetics Program is a nationwide research initiative to increase our understanding of the genetic causes of PSP, CBS and MSA. The study will collect DNA via a blood sample from the comfort of your home. The sample will then be sent to Massachusetts General Hospital (MGH) and to the NIH for genetic research to help us learn more about PSP, CBD and MSA. All activities are free of charge.

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By participating, you may be able to:

  • Help us to understand the causes of PSP, CBS and MSA
  • Help to improve the diagnosis and treatment of these diseases


Learn more about genetics before you enroll with this video:


Frequently Asked Questions

You are eligible if you:

1) Have a diagnosis of PSP, CBD or MSA.

2) Reside in the United States.

After you sign up for the program, your physician will be contacted to attest to your diagnosis.

 

You can apply to the program here. After you sign up for the program, your physician will be contacted to attest to your diagnosis. You will then receive a phone call from 617-643-2400 or an email from mghpsp@partners.org to set up your consent appointment. Please watch for this phone call or email and if you do not hear from us in 3 weeks, feel free to reach out to us directly.

The phlebotomists who are collecting the sample are trained to take a small sample of your blood efficiently and sanitarily. They will use a small needle and take less than 2 tablespoons of blood total.

The phlebotomist will securely mail the sample to genetic researchers at MGH and the National Institutes of Health in Bethesda, MD. All shipping and handling costs are covered by the CurePSP Genetics Program. In the unlikely event that a variant is found in your sample, you will be contacted for follow-up by the MGH team. Please note, it may take up to two years to hear back.

Researchers are testing for new genes and variants in your DNA. Most people will not have a significant disease-related gene variant found in their DNA, and will not receive additional outreach about their genetic sequencing results. In the unlikely event that a variant is found in your sample, you will be contacted for follow-up by the MGH team. Please note, it may take up to two years to hear back.

If you have a question about whether your sample was received, or questions about your results, please contact the MGH team at mghpsp@partners.org or 617-643-2400.


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About Us

The CurePSP Genetics Program is a collaboration between CurePSP, Massachusetts General Hospital (MGH), the National Institutes of Health (NIH), the Global Parkinson’s Genetics Program (GP2), and Indiana University School of Medicine.

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