RecruitingOBSERVATIONAL

PD Frontline (Part of RAPSODI GD) Remote Assessment of People With Parkinson's

PD Frontline is a study for people living with Parkinson's disease, designed to help them get involved in research from home. It's an online study where you first answer a questionnaire. After that, you'll receive a kit in the post to collect a saliva sample. This sample will be used to check for changes in two specific genes, GBA and LRRK2, which are known to be connected to Parkinson's. You'll be told your results and kept updated about any new studies or trials that might be a good fit for you. The aim is to help researchers find suitable people for future studies that focus on genes and Parkinson's.

At a glance

Status

Recruiting

Sponsor

University College London Hospitals

Enrolment target

4,800

Start

15 Feb 2020

Estimated completion

20 Aug 2040

Parkinson Disease

What is this study about?

PD Frontline is an exciting online study that aims to bring people with Parkinson's disease right to the front of research efforts. It's all about helping scientists understand Parkinson's better, especially how our genes play a part. By joining, you're helping to speed up the process of finding new and better treatments.

To take part, you'll first answer some questions online. Then, a simple kit will be sent to your home for you to provide a saliva sample. This sample is used to check for specific changes in two genes, called GBA and LRRK2. These genes are known to be linked to Parkinson's, and understanding them better could open doors to new medicines and tailored treatments in the future.

Once your genes have been checked, you'll be given your results. This study is a great way to find out more about your own genetics connected to Parkinson's and to be informed about any future research opportunities that might be suitable for you.

Key takeaways

It's an online study from home for people with Parkinson's.
You'll provide a saliva sample to check specific genes.
You will receive your personal genetic test results.
It helps identify people for future gene-focused Parkinson's research.
This study doesn't involve clinic visits or new medications.
Open to people with Parkinson's aged 18-90.

Who may be eligible?

This study is looking for people who have been formally diagnosed with Parkinson's disease. You need to be between 18 and 90 years old to take part. The study is open to everyone, regardless of gender.

However, there are a few reasons why someone might not be able to join. For example, if you already know you have a specific change in the GBA gene, you'll be directed to a related study called RAPSODI. Also, if you have other conditions that can look like Parkinson's, such as certain types of dementia or other movement problems, you won't be able to join. This also applies if you are taking certain medications that can cause symptoms similar to Parkinson's.

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 you have a formal diagnosis of Parkinson's disease?
Are you between 18 and 90 years old?
Have you been told you do NOT carry a GBA gene variant already?
Do you NOT have another neurological condition like certain dementias or other movement disorders?
Are you NOT taking medications known to cause Parkinson's-like symptoms?

Answer every question to see your result.

What does participation involve?

If you decide to take part in PD Frontline, your involvement will be quite simple and manageable from home. You will first complete a questionnaire online. After that, you'll receive a special kit in the post which contains everything you need to collect a saliva sample. You'll just need to follow the instructions to provide your sample and send it back.

There are no clinic visits involved, and you won't be asked to take any new medication as part of this specific study. After your sample is analysed, you will receive your genetic results. The study team will then keep you informed about any other research studies or trials that might be a good match for you in the future. This is a one-off assessment and doesn't involve ongoing follow-up within this study, beyond being kept in the loop about potential future research.

Potential risks and benefits

A potential benefit of joining this study is gaining a clearer understanding of how certain genes might be involved in your Parkinson's. This information could lead to opportunities to take part in future research studies that are specifically designed for people with changes in these genes. Knowing your genetic information could also become more important as new, more personalised treatments are developed. The main risk involved is the emotional impact of learning about your genetic results; our genes are very personal, and understanding them can sometimes bring up questions or feelings you might not expect. Remember, you have the right to withdraw from the study at any time, for any reason, without it affecting your care.

Locations (1)

Some site locations are approximate. We're improving this — please verify with the trial team before travelling.

University College London (UCL)
Verified postcode
London, United Kingdom· Recruiting

Common questions

What is PD Frontline?

It's an online study for people with Parkinson's to find out about their genes and help researchers.

What do I have to do if I join?

You'll fill out an online questionnaire and send in a saliva sample using a kit sent to your home.

Will I get my gene results?

Yes, you will be told the results of your genetic tests for the GBA and LRRK2 genes.

Do I need to visit a clinic?

No, this study is entirely online and done from your home. You won't need to visit a clinic.

Will I have to take new medication?

No, this study does not involve taking any new medications.

How to find out more

Orla Mitchell

pdfrontline@ucl.ac.uk 020 801 68413 Official trial record

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