Brain Health Study participant FAQs

UK Biobank is running a new study about brain health. The aim of the study is to help researchers develop better ways to diagnose and treat brain health conditions like dementia and Parkinson’s disease.

We recently sent out a brain health survey to participants living close to our brain health research centre. The answers to our brain health survey show which participants are eligible to receive an invitation to the study.

No, you can choose if you want to be in this study or not.

If you are a current UK Biobank participant, your decision will not affect your ongoing relationship with UK Biobank.

If you have been asked to take part as a Study Partner, your decision will not affect the ability of your relative/friend to take part, nor their ongoing relationship with UK Biobank.

No, participants will not receive the results of the tests or a diagnosis. This is because the tests and brain scans collect research information and are not checked by a doctor.

However, we will contact participants and their GP if the radiographer doing the brain scan sees something abnormal and unexpected that may be medically important.

In another UK Biobank study, we found abnormal appearances in 1% of people scanned, and for half of these people, the abnormality turned out to be nothing to worry about.

Abnormalities might turn out to be something harmless like a cyst or a technical issue with the scan. It could also be related to a condition that participants and their GP already know about. However, other abnormalities might affect bodily functions, on quality of life, or lifespan.

In case it is something more serious, we will ask for permission to tell participants and their GP if we notice something on their scan.

Joining the study will not affect the care participants receive from your doctor.

There are no direct benefits to participants and their Study Partners, but the Brain Health study will help scientists better understand different types of brain health conditions. This could lead to simpler methods of diagnosis and better treatments for future generations.

Some participants may regard finding out about an abnormal appearance (if one is noticed during the scan) as a benefit. However, others may regard this as a risk if this abnormal appearance turns out to be nothing serious (because of the short-term anxiety this information may cause). Please see ‘Do I get any results from my visit?’ for more information.

Taking part in the Brain Health Study should not cause harm. We have chosen scans and tests that are safe, painless, relatively quick and comfortable.

The MRI scanner uses powerful magnets and we take great care to prevent magnetic objects from entering the MRI room. Before you enter the room, we will ask you some questions to confirm your suitability for doing so.

MRI scans involve lying flat in a slightly confined space and a small number of people may find this uncomfortable. However, the scanners we use in this assessment are wider (about 70 cm, or 27 inches in diameter) than those typically used in hospitals to help with this.

Some participants may feel some discomfort when they have blood taken, although our health research assistants are specially trained to minimise this.

We would not recommend that participants use the cardiac monitor if they have an allergy to any skin adhesives.

We take very seriously the health and safety of our participants and staff alike and put in place strict measures to ensure that our centres are safe. We routinely review our operational practices to minimise the risks to safety and to prevent the transmission of infections. To help with this, please do not attend your research centre appointment if you have an infection which might affect or be transmitted to those around you, for example a respiratory infection (such as COVID-19, a cold or influenza), vomiting and diarrhoea or shingles.

We will store information and samples from your visit (for example, scans, blood results and questionnaire answers) for many years. The information will be used by approved researchers for medical and other health-related research. This includes scientists working in other countries and in commercial companies.

We ask researchers to return their findings to us so they can be included in our database for other researchers to use. Scientists must also make the results of all research based on the resource publicly available so that everyone can benefit from it. You can find out about research that is being done using UK Biobank data.

We will never pass on any information that could identify you to insurance companies or employers. Also, we will not allow the police, security services, relatives or lawyers to access your information, unless we are forced to do so by the courts.

All the research conducted by UK Biobank is looked at by an independent group of people, called a Research Ethics Committee, to protect participants’ interests. This study has been reviewed and approved by the North West – Haydock Research Ethics Committee.