RecruitingOBSERVATIONAL

Parkinson's Families Project

The Parkinson's Families Project is looking for new genes that cause or increase the risk of Parkinson's disease. Around 127,000 people in the UK have Parkinson's. Researchers believe that by studying families where some members have Parkinson's and others don't, they can more easily identify these genes. They are especially interested in people who developed Parkinson's before age 45, or who have other family members with the condition. Finding these genes could lead to better ways to diagnose Parkinson's, and ultimately, to new and more effective treatments that could slow down or prevent the disease from getting worse.

At a glance

Status

Recruiting

Sponsor

University College, London

Enrolment target

2,000

Start

01 Apr 2015

Estimated completion

01 Jan 2027

Parkinson's Disease Parkinsonism

What is this study about?

One person in every 500 in the UK has Parkinson's, a condition that slowly gets worse over time and currently has no cure. While there are many treatments available to help people manage their symptoms and live a better quality of life, researchers are always looking for ways to develop new treatments that work even better, perhaps by slowing down the disease or even stopping it from progressing.

This study, called the Parkinson's Families Project, is particularly interested in understanding why some people develop Parkinson's, especially those who get it at a younger age (before 45) or who have other family members with the condition. Scientists believe that changes in our genes, which are like the instruction manual for our bodies, can sometimes play a role in causing Parkinson's. By carefully comparing the genes of people with Parkinson's and their family members who may or may not have the condition, they hope to find these important genetic changes.

Finding new genes linked to Parkinson's is really important because it helps us understand the disease much better. This knowledge can then open doors to developing new and more accurate ways to diagnose Parkinson's, create better laboratory models to study it, and most importantly, lead to the development of new treatments that could potentially make a big difference in the lives of people with Parkinson's.

Key takeaways

It aims to find new genes linked to Parkinson's disease.
It focuses on people with early-onset Parkinson's or a family history.
Understanding these genes could lead to better diagnoses and treatments.
The study includes those with Parkinson's and their family members (affected or not).
Participation could help future understanding and treatments for Parkinson's.

Who may be eligible?

To join this study, you must be at least 16 years old. Researchers are specifically looking for people who have been diagnosed with Parkinson's disease or a similar condition called parkinsonism. You would be considered if you either developed your symptoms before the age of 45, or if you have another close family member (like a parent, sibling, or child) who also has Parkinson's or parkinsonism.

They are also interested in including family members of someone who has Parkinson's. This means if your parent, sibling, or child has Parkinson's, you might be able to join the study too, whether you have the condition yourself or not. This helps researchers compare the genes within families.

However, if you are unable to understand and agree to take part in the study, you would not be able to participate. This ensures that everyone who joins does so willingly and with a clear understanding of what's involved.

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.

Are you 16 years old or older?
Have you been diagnosed with Parkinson's disease or a similar condition?
Did your Parkinson's symptoms start before you were 45 years old, OR do you have a close family member with Parkinson's?
Are you a close family member of someone who has Parkinson's (even if you don't have it yourself)?
Can you understand what the study involves and agree to take part?

Answer every question to see your result.

What does participation involve?

The information provided does not specify the details of what taking part involves, such as the number of visits, specific assessments, or the duration of the study. Typically, genetic studies like this would involve providing a small sample such as blood or saliva for genetic testing. It's likely that you would have an initial visit to discuss the study and provide your consent, and then give a sample. There is no mention of new medication or ongoing follow-up in the brief summary. You should ask the study team for full details.

Potential risks and benefits

A potential benefit of joining this study is contributing to a deeper understanding of Parkinson's disease, which could ultimately lead to better diagnosis and new treatments for future patients. While there are typically very low physical risks associated with providing a blood or saliva sample, some people may feel a small amount of discomfort. The main risk might be emotional, relating to finding out more about genetic information, though the study information given does not specify if individual genetic results will be shared. You have the right to withdraw from the study at any time without giving a reason, and this would not affect your medical care.

Locations (2)

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

Royal Free London NHS Foundation Trust
Verified postcode
London, United Kingdom· Recruiting
University College London Hospitals NHS Foundation Trust
Verified postcode
London, United Kingdom· Recruiting

Common questions

What is the main goal of this study?

The main goal is to find new genes that cause or increase the risk of Parkinson's disease.

Who are they most interested in for this study?

They are particularly interested in people who developed Parkinson's before age 45, or who have other family members with the condition.

Why is studying families important for this research?

Studying families helps researchers more easily find new Parkinson's genes because family members share similar genetic backgrounds.

What could be the long-term impact of this research?

This research could lead to better ways to diagnose Parkinson's and develop new, more effective treatments.

Will I find out my genetic results?

The information provided does not specify whether individual genetic results will be shared with participants.

How to find out more

Study Coordinator

ion.pdresearch@ucl.ac.uk 02080168174 Official trial record

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