Taking Part in our Research
Are you already signed up to take part in a research project?
Here is some information that you may find helpful. You will be given a lot more details when you come for your scan, and will be able to ask any questions that are not covered here.
GENERAL INFORMATION ABOUT TAKING PART AS A VOLUNTEER
UEA runs a range of studies focused on how the brain works. If you participate in one of the research projects, you will be given more information about what is being studied.
Studies are organised and supervised by various researchers and approved by an independent group of people who have a duty to protect research volunteers’ safety, rights, wellbeing and dignity.
The researcher will give you a sheet that tells you all about the study and gives details about how your personal data is used and stored
Yes. Even after you have signed that form you can withdraw from the study without having to give us a reason.
It is up to you whether to take part. You will be given information about the study before you make up your mind. If you decide to take part, we will ask you to sign a form indicating that you have agreed.
If you are very uncomfortable in small, confined spaces you may not wish to participate.
No. We will remove your personally identifying information as soon as possible after data collection to protect your privacy.
If video or audio recordings are going to be made, you will told be how, and for how long, these are stored, what will happen to recordings after transcription has taken place and who will have access.
You will be reimbursed for your travel expenses, up to a limit that you can discuss with the researcher. Some studies are also able to offer payments to volunteers.
ON THE DAY OF THE SCAN
You will visit the UEA Brain Imaging Centre for a session of up to 2 hours.
This will vary, depending on the study you are taking part in. You may be asked to do one or more computerised tasks that test your memory or perception (e.g. how you see or hear things).
You may also be asked to perform these tasks within an MRI scanner, possibly with additional EEG recording. For example, you might be shown a series of letters on a computer screen, and asked to decide whether it is a word or not.
All of the tasks will be explained in detail before you start and you will have the opportunity to practice them and ask any questions you may have.
These tasks are not usually a test of how your abilities compare with those of others but rather how people in general perceive the world.
Sometimes there is no ‘correct’ answer, we just want to know what you can see or hear.
Because of the strong magnetic field, before you can go into the scanner, a qualified MRI operator will ask you to remove all metal belongings (which we will store safely) and check that you have no metal within your body.
When you attend for your scan, please try to wear clothing that is comfortable and loose fitting and does not have metal parts (e.g. wear jogging pants instead of jeans with zipper).
Occasionally it may be necessary for participants to remove items of clothing e.g. bra (due to the underwire/adjusters), so you may prefer to wear a sports bra for your visit.
MRI stands for “magnetic resonance imaging.”
MRI uses a strong magnetic field to give us a 3D picture of your brain and allows us to see changes in the activity of different parts of your brain as you do tasks.
MRI does not involve injections or x-rays, and is used routinely in modern medicine.
Once everything has been checked for safety and you are happy to proceed, you will be placed on the scanner bed and made comfortable with the use of padding (e.g. under your knees).
For brain scans you then move into the scanner head first, and remain inside the long tube whilst the scans are taken.
There is normally a mirror placed above your eyes that will allow you to see the screen inside the scanner, so you can watch a movie or complete the tasks.
In between scans, a two-way intercom will allow you to communicate with the MRI operator.
The scanner is very noisy and you will be asked to wear ear-plugs.
You will be provided with a hand-held alarm that you can squeeze if you become uncomfortable or distressed at any time. This will alert the operator who will immediately stop the scan and check you are okay, and if necessary remove you from the scanner.
To collect good quality scans it is important that you keep your head and body as still as possible when in the scanner. Scans typically last 30 to 60 minutes.
With the appropriate safety checks in place, MRI is a safe, non-invasive imaging technique, with no known side effects.
The MRI operator will ask you questions to ensure that you will be comfortable in the scanner’. If the MRI operator does not think it is safe for you to be scanned we will not continue
AFTER THE SCAN
Possibly. You may be required to attend several sessions. The researcher will explain this to you in advance.
Your research MRI scan is not a clinical examination and we do not run diagnostic scans. The MRI operator is not a qualified radiologist.
However, if we suspected that there was something abnormal on your scan (that was not already on your records), we would take steps to confirm these findings and (with your consent) contact your GP, who may then contact you to discuss further.
A research MRI scan is not a substitute for proper clinical investigation, if you suspect you are suffering from a neurological problem (affecting the brain or nervous system) you should always consult your GP in the first instance.
You will be asked to have provide us with two types of information.
- Personally identifiable information includes your name, address and date of birth – information from which you could be identified and that we use to contact you, calculate your age and so on.
- Anonymised research data includes information like the buttons you pushed on a computer task, information from a brain scan and your answers on a questionnaire; in other words, once it is no longer connected to your Personally Identifiable Information, information from which it would not be possible, or would be very difficult, to identify you personally.
We separate your Personally Identifiable Information from your Anonymised Research Data and treat these two types of information very differently.
Your anonymised research data will be analysed by our research team. All imaging data will be stored anonymously with a participant code that cannot be linked back to your personal data. Your anonymised data may be placed onto an online repository in line with open science practices.
If you have questions about how long and for what reasons your Personally Identifiable Information is held, please ask the researcher.
If you have taken part in a brain scanning study, the scanner operator will have been through a safety-screening sheet with you. This is an important record that safety procedures were followed. This sheet includes your name, address and date of birth and the name and address of your General Practitioner (GP).
The MRI Facility Administrator keeps a secure copy of this sheet for 10 years in case of safety audit, even if you stop participating in studies here. After 10 years this record will be deleted.
The Facility Administrator also maintains a database containing your participant code and contact details. This will be deleted after 2 years. This is to allow UEA researchers to ask you about other research studies in which you might be interested in participating.
It is important that, as researchers, we minimise potential harm to volunteers in our studies. We often use new techniques and interpreting research data can be complicated and has the potential to cause undue concern. For this reason we do not divulge individual results (with the exception of abnormalities detected on MRI scans, see above).
If you have concerns about your performance please discuss these with the researcher.