RecruitingOBSERVATIONAL

Parkinson's Foundation PD GENEration Genetic Registry

This study, called 'Parkinson's Foundation PD GENEration Genetic Registry,' is creating a central collection of genetic information specifically from people with Parkinson's disease. Its main goal is to gather and store genetic data to help scientists better understand Parkinson's in the future. Participants will undergo a genetic test to look for seven specific gene changes known to be linked to Parkinson's. The study involves sharing these test results and some of your DNA for research. By doing this, researchers hope to unlock secrets about how Parkinson's develops and progresses, potentially leading to new treatments or ways to manage the condition. It's an important step towards advancing our knowledge of Parkinson's.

At a glance

Status

Recruiting

Sponsor

Parkinson's Foundation

Enrolment target

25,000

Start

20 Dec 2020

Estimated completion

01 Jul 2026

Parkinson's Disease

What is this study about?

This study is called the Parkinson's Foundation PD GENEration Genetic Registry. It's all about gathering information from people with Parkinson's disease to create a large, central library of genetic data. Think of it like building a huge database of blueprints, where each blueprint holds information about someone's genes. By collecting many of these 'blueprints' from people with Parkinson's, scientists hope to find patterns and learn more about why Parkinson's develops and how it affects different people.

The main idea is to understand the genetic side of Parkinson's disease. Researchers believe that certain changes in our genes can play a role in whether someone develops Parkinson's. By looking at these genetic changes in a lot of people, they can start to piece together the puzzle. This information will then be used for future research, which could lead to new ways of diagnosing, treating, or even preventing Parkinson's disease.

Taking part would involve having a genetic test. This test looks for seven specific gene changes that are already known to be linked to Parkinson's. The results of your test and a small sample of your DNA would be securely stored in this central library for scientists to study. This is a big step towards a clearer understanding of Parkinson's and improving the lives of those affected by it.

Key takeaways

This study collects genetic information from people with Parkinson's disease.
It aims to build a central resource for future Parkinson's research.
Participants will have a genetic test for specific Parkinson's-related genes.
You will receive your genetic test results.
Your data will help scientists understand Parkinson's better.
It does not involve new medications or treatments.

Who may be eligible?

To be considered for this genetic study, you generally need to have a probable diagnosis of Parkinson's disease, as confirmed by a specialist doctor. You must also be willing to have a genetic test that checks for specific gene changes linked to Parkinson's, and you need to be comfortable with receiving the results of this test. It's important that you are able to understand and sign consent forms, agreeing to take part, and be able to complete some surveys, either online, in person, or on paper.

There are also some reasons why you might not be able to join. For example, if you have a different type of Parkinson's-like condition that isn't true Parkinson's disease (like multiple system atrophy), or if your Parkinson's symptoms are thought to be caused by certain medications or other health problems, you wouldn't be eligible. Also, if you've had a blood transfusion in the last three months, have certain blood cancers, or have had a bone marrow transplant in the last five years, you wouldn't be able to participate. Finally, you need to be at least 18 years old to join.

Could this study suit you?

Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.

Do I have a probable diagnosis of Parkinson’s disease?
Am I willing to have a genetic test and learn my results?
Am I able to understand and sign consent forms?
Can I complete surveys, either online or on paper?
Am I at least 18 years old?
Have I had a blood transfusion in the last 3 months, or certain blood conditions/bone marrow transplants in the past?

Answer every question to see your result.

What does participation involve?

If you decide to take part in this study, the main thing you'll do is consent to have a genetic test. This test will look for seven specific gene changes associated with Parkinson's disease. You will typically be informed of your genetic test results. You'll also be asked to share your genetic data and a small sample of your DNA to be stored in a central collection for future research. This study doesn't involve taking new medication or having regular check-ups purely for the study. You will also need to complete some surveys, which you can do online, in person, or on paper. The study doesn't specify a total duration for your direct involvement beyond the initial testing and survey completion, but your genetic information will be stored for ongoing research.

Potential risks and benefits

A potential benefit of joining this study is gaining information about your own genetic makeup related to Parkinson's disease, which can be useful for you and your family. More broadly, your participation will help researchers create a vital resource that could lead to a deeper understanding of Parkinson's and potentially new treatments in the future. As for risks, sharing genetic information always has privacy considerations, though the study aims to keep your data secure. There's also the emotional impact of receiving genetic test results. Remember, you always have the right to withdraw from the study at any time, even after agreeing to take part.

Locations (56)

University of Alabama Birmingham
Verified postcode
Birmingham, United States· Recruiting
MD First Research
Verified postcode
Chandler, United States· Terminated
Barrow Neurological Institute
Verified postcode
Phoenix, United States· Recruiting
University of Arkansas
Verified postcode
Fayetteville, United States· Recruiting
University of California San Diego (UCSD)
Verified postcode
La Jolla, United States· Recruiting
University of California Los Angeles
Verified postcode
Los Angeles, United States· Recruiting
University of California San Francisco (UCSF)
Verified postcode
San Francisco, United States· Recruiting
University of Colorado Anschutz
Verified postcode
Aurora, United States· Recruiting
Hartford Healthcare
Verified postcode
Hartford, United States· Recruiting
Aventura Neurology - Visionary Investigators Network
Verified postcode
Aventura, United States· Recruiting
Parkinson's Disease & Movement Disorder Center of Boca Raton
Verified postcode
Boca Raton, United States· Recruiting
University of Florida
Verified postcode
Gainesville, United States· Recruiting

Common questions

What is a 'genetic registry'?

It's like a big library or database that collects genetic information from many people with a certain condition, in this case, Parkinson's disease.

What will happen to my genetic information?

Your genetic information will be stored securely in a central collection to be used by researchers for future studies on Parkinson's disease.

Will I find out my genetic test results?

Yes, if you choose to participate, you will be informed of your genetic test results for the genes they are looking at.

Do I have to take any new medicines?

No, this study is about genetic testing and collecting data; it doesn't involve taking any new medications.

Can I leave the study at any time?

Yes, you have the right to withdraw from the study at any point without it affecting your medical care.

How to find out more

Kamalini Ghosh, MS

kghosh@parkinson.org 1-800-473-4636 Official trial record

Always speak to your GP or specialist before deciding to take part in a study.