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
This project is not recruiting.
Overview
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 2. Improve Parkinson's care and research: This study will provide 3. Accelerate clinical trials for Parkinson's: Current genetic clinical trials
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.
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.
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.
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Principal Investigator
Who can participate
People diagnosed with Parkinson's Disease that are willing to learn their genetic status.
Who cannot participate
People that are diagnosed with an atypical parkinsonian disorder
What you may be asked to do
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
What You May Get
Subjects will not receive payment for their participation in the study. However, they will receive their genetic results.
Location
Massachusetts General Hospital
55 Fruit St. Boston, MA, 02114
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.
Additional Information
Funding Source
- Foundation