Frequently Asked Questions

Taking part will involve registering and completing a series of online tests, which will take up to 20 minutes. We’d prefer if you could do this all in one go.

Take part now or read the answers to some of our frequently asked questions below.

If you can’t find the answer to your question, please contact a member of the study team at support@predictpd.com

The PREDICT-PD study’s main aim is to find better ways to predict who will get Parkinson’s and in the long run offer those people opportunities to get involved in trials to prevent or slow down the disease.

The study will estimate your risk of Parkinson’s but until there is treatment trial or intervention to offer, we do not intend to reveal your results to you.

Parkinson's is a progressive neurological condition. People with Parkinson's don't have enough of a chemical called dopamine because some of the nerve cells in their brain have died. Without dopamine people can find that their movements become slower so it takes longer to do things. There is currently no cure for Parkinson's and one reason is because we identify it too late.

At present, the diagnosis of Parkinson’s is made clinically. This means that the doctor examines the person and takes a detailed history of their symptoms. The signs of Parkinson’s may include problems with movement like tremor, stiffness, slowness of movement, difficulties with handwriting and loss of facial expression. Other symptoms, not related to movement, can also be present such as loss of sense of smell, depression, constipation and sleep problems.

We are looking for healthy people aged between 60 and 80 years, who reside in the UK and have access to the Internet, and do not currently have a diagnosis of Parkinson’s. People with a family history of Parkinson’s are welcome to participate.

You will need to register with the PREDICT-PD website. If you have participated in previous years you will already be registered. Next you’ll be asked to complete a series of online tests (click here for further information). You may be asked to complete a smell test and spit test (for genetics) sent through the post, and perhaps wear an activity watch. Some participants will also be invited for in-person visits.

There is no obligation to take part in the study, and the decision to participate rests entirely with you. You also have the right to withdraw from the study at any point, and are not obliged to provide a reason. If you do choose to participate, please read the information on these pages carefully. You will then be asked to read and complete a consent page before registering on the website.

The current study is funded to last for another 4 years. Towards the end of that period we will seek further funding to support the study on into the future.

There are no plans presently to offer to reveal the results of genetic testing to participants.

You will receive no payment for your assistance with this study. Of the 10,000 participants we aim to recruit to the PREDICT-PD study; only around 100 are likely to develop Parkinson’s at some stage in the future. If anyone in the study does develop Parkinson’s they could potentially have earlier access to diagnosis and treatment. By taking part in this study you will be helping us find ways of diagnosing Parkinson’s at the earliest possible stage. This could potentially pave the way to better treatments and a cure – benefiting people with Parkinson’s all over the world. There are no anticipated risks in being part of this study. The information we collect will not be personally identifiable and will be entirely confidential.

You also have the right to withdraw from the study at any point, and are not obliged to provide a reason.

We will regularly post updates about the study and the collective results to this website and our blog and Twitter feed

We take the security of everything you tell us very seriously. The data are stored on a secure web server. Only the members of the study team will have access to your information. We keep identifiable information (your name, date of birth, contact details) separate from all the questionnaire data. We may, in time, share the survey data (without your name etc) with other researchers. We are supported by the QMUL and UCL information governance teams to ensure we are maintaining the best practice in keeping your information safe and secure.

Your data will be used to understand more about risk factors for Parkinson’s and how we might identify a group of people at risk in the future. Researchers at QMUL and UCL will carry out the analysis of data in the first instance. In time, anonymous data from the study may also be shared with authorised researchers and institutions both in the UK and abroad, to further the impact of the study. This would only occur after a formal application process and the legal/ethical agreements.

We plan to ask participants to complete a smell test and a spit test for genetic studies in 2019.

This study has been reviewed and approved each year by the ‘Central London Research Ethics Committee 3’ since 2011.

You are welcome to contact the PREDICT-PD team and the PREDICT-PD study coordinator Aneet Gill (click here)