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Note: This study is currently only recruiting patients in the hospital.

If you are interested in being notified if this study begins recruiting from the general population, please use the 'I Am Interested' button below.

PD GENEration: the Parkinson's Disease Genetic Initiative

The Parkinson's Foundation Genetics Initiative is the first national Parkinson's Disease study to offer no cost genetic testing plus counseling for Parkinson's-related genes through medical professionals.

5 hours over 1 year
Estimated Time Commitment
Any Sex/Gender, 18-years or older
May Be Eligible
No compensation
May Be Offered
Survey, Blood draw, Office visit
May Be Required
 
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This project is not recruiting.

What we are studying

Genetic testing, which involves a simple blood draw, is a type of medical test that identifies changes, or mutations, in genes. Some of these mutations may increase the chances of developing a particular disease or predict responses to specific disease interventions. For people with Parkinson’s disease, genetic testing can let us know if you carry mutations linked to the disease. It’s estimated that 10-15% of patients have a genetic form of the disease, so by better understanding how these people experience symptoms related to Parkinson’s disease and respond to medicine, scientists can begin to build the foundation for precision medicine in Parkinson’s.


Why it is important

Genetics can be a powerful tool used to help us uncover key mechanisms
responsible for slowing or stopping the progression of Parkinson's disease
(PD), ultimately improving care and speeding development of new
treatments.


What we hope to accomplish

1. Empower people with Parkinson's: Providing genetic data within a
clinical setting will allow people with PD to better manage their
disease and potentially improve their quality of life. Genetic data offer
insights into disease progression and symptom severity that may
potentially influence clinical care and treatment decisions. 


2. Improve Parkinson's care and research: This study will provide
clinicians and researchers with new tools, knowledge and therapy
options for people with PD. This study will link genetic tracking with
data from the largest-ever clinical study of Parkinson's — the
Parkinson's Outcomes Project.


3. Accelerate clinical trials for Parkinson's: Current genetic clinical trials
may stall or fail because most people with Parkinson's and their
clinicians do not know their genetic status. The Foundation will provide
genetic testing and counseling to help accelerate clinical trial
enrollment.

Principal Investigator

Anne-Marie Wills, MD

Massachusetts General Hospital

Public Profile

People diagnosed with Parkinson's Disease that are willing to learn their genetic status. 

People that are diagnosed with an atypical parkinsonian disorder  

Participants will be asked to complete multiple questionnaires, undergo congnitive and physical assements, and have one blood draw. When the genetic results are complete, they will speak with their physician and/or a genetic counselor.  


Project activities may include:

  • Survey
  • Blood draw
  • Office visit

Estimated Time Commitment

5 hours over 1 year


Subjects will not receive payment for their participation in the study. However, they will receive their genetic results.

Massachusetts General Hospital
55 Fruit St. Boston, MA, 02114

Map it!


Travel

  • Accessible by public transportation
  • Parking available
  • Parking reimbursed

Travel and Parking Details

Participants may park at the Massachusetts General Hospital facilites. They will be given a sticker at the visit to reimburse for parking fees. 


ClinicalTrials.gov Identifier

NCT04057794


Participating Institutions


Funding Source

  • Foundation
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