Study Resources

Care partner doing Tasso+ blood kit into individuals arm

Thank you for your interest in participating in the Parkinson’s Foundation PD GENEration study.

These key resources are designed to help you participate in PD GENEration. They include instructional videos and study information.

If you have additional questions about how to participate after reviewing the information below, please email the PD GENEration team at Genetics@Parkinson.org or call our Helpline at 1-800-4PD-INFO (1-800-473-4636).

Introduction to PD GENEration Video

This video introduces you to the Parkinson’s Foundation PD GENEration study and covers the general concepts in genetics, the scope of genetic testing offered through PD GENEration and some of the implications of genetic testing.

PD GENEration Study Documents

The below key documents and protocols have been approved by the study’s Institutional Review Board. These documents are used by our team to help conduct the PD GENEration study.

Regulatory Documents

Tasso+ Kit Video

En español

PD GENEration samples are collected using a Tasso+ kit if you are participating at home. Watch the videos below before using the Tasso+ kit.

These videos are designed to help you successfully complete your sample collection at home. You can either watch a person with Parkinson’s or a care partner use the kit to help a person with Parkinson’s. If you have questions or need assistance after watching a video, please contact the live proctoring service using the card included in your kit.

Person with Parkinson’s

View written instructions with photos

Person with Parkinson’s with a Care Partner

View written instructions with photos

Additional Tasso+ documents

  • FAQ: This document answers the top questions people with Parkinson’s and their families have about using the Tasso+ kit.
  • Instruction Manual: This instruction manual included in your Tasso+ kit provides step-by-step written instructions on how to successfully complete your sample collection.
  • UPS Pick-up Postcard: This postcard included in your Tasso+ kit explains how you can schedule a same day pick up for shipping your blood sample to our laboratory.
  • Parkinson’s Foundation Helpline Postcard: This postcard included in your Tasso+ kit provides information on the Parkinson’s Foundation Helpline, such as how to contact them and how they can assist you.

Secondary Health Related Findings

PD GENEration offers optional testing for additional PD-related genes, as well as the CDC-10. The additional PD-related genes are genes that may be related to Parkinson’s disease, rare or atypical forms of Parkinson’s disease, or overlapping neurologic conditions. The CDC-10 genes are not related to Parkinson's disease but could be important to you and your family's health. They include variants in a limited set of health-related genes associated with specific inherited breast or colon cancer syndromes or inherited heart conditions. When enrolling in the study you can consent to be notified if you test positive for these additional PD-related and non-related genes.

This list is subject to change

As of June 1, 2024
Secondary Panel (31 Genes):

  1. PD-related Gene List: RAB39B, VPS13C, PTRHD1, SYNJ1, POLG, DNAJC6, ATP13A2, DCTN1, ATP1A3, SLC6A3, TH, GCH1, FBXO7, PLA2G6, ATP7B, MAPT, GRN, TBK1, VCP1, RAB32, CHCHD2
  2. CDC10 Gene List: BRCA1, BRCA2, MLH1, MSH2, MSH6, PMS2, EPCAM, LDLR, APOB, PCSK9
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