CurePSP Genetics Program

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, but if a variant is found in your sample, you will be contacted by the team to get a second sample to confirm the finding. A genetic variant is any sort of abnormality or mistake in the gene. Genetic variants can mean many different things and should not be cause for alarm.   

If you decide that you want to learn more about the variant, you will set up a time to have a second sample taken with a clinical laboratory and discuss the results with a genetic counselor. A genetic counselor is someone who will walk you through the results of your genetic test and answer any questions you may have. 

If you have a diagnosis of progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), corticobasal syndrome (CBS) or multiple system atrophy (MSA), you are eligible to participate. The Genetics Program team will obtain proof of diagnosis from your neurologist once you have provided contact information.

The Genetics Program is currently only available to people within the United States.

By collecting genetic samples of people with confirmed PSP, CBD or MSA diagnoses, researchers are hoping to learn about the underlying causes of these diseases. Learning about how genes play a role can help us better treat these diseases and eventually, hopefully, find a cure.

The program is completely free. 

Registering means signing up for the study using the survey. Enrolling means that you have signed your consent to participate (this will be done using a virtual meeting).

The CurePSP Genetics Program needs a sample of your blood, taken by a certified phlebotomist.  

A certified phlebotomist will collect your sample in the comfort of your own home.  

Once you are registered in the study and have watched the pre-consent genetic counseling video, connected with the coordination center and have signed an electronic virtual consent form, our team will schedule an appointment for the local phlebotomist to come to your home. A program coordinator will walk you through each of these steps.

Please Note: You will receive the collection kit prior to your appointment with the phlebotomist – you can open the package, but it's important not to open the kit itself. The phlebotomist will do so during your appointment.  

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 the National Institutes of Health in Bethesda, MD. All shipping and handling costs are covered by the CurePSP Genetics Program.