Donate your scan

We are constantly trying to improve the use of brain MR scans to understand the effects of blood vessel diseases on the brain. Using this database of images, we can test out new analysis methods to detect many more subtle features, testing the reliability of analysis methods and looking for ways to improve prediction of future stroke or dementia, so that we can try to improve the care of patients in the future.

You are having, or have recently had, a magnetic resonance brain scan because you have seen one of the doctors in the Emergency Department, in the Outpatient Clinic, or on the Hospital Ward, either because of some unusual brain symptoms, or a suspected mini-stroke or stroke. We would like to add your scan information to our large database of scans from patients with similar problems, so that we can do better research to improve patient care in future.

No, it is up to you to decide whether or not to take part. If you do decide to take part, you will be given this information sheet and a data protection information sheet to keep. You will be asked to sign a consent form with a member of staff. If you decide to take part, you are still free to withdraw at any time and without giving a reason. If you decide to withdraw and so wish, we will remove your scan and related data from the database. Deciding not to take part or withdrawing from the study will not affect the NHS care that you will receive.

All brain scans are examined by a radiologist and a report is sent to the doctor who asked for the scan in order to guide your usual medical care in the NHS.

If you agree, your brain scan will be anonymised (stripped of your identifiable and personal information), identified only by a unique number and stored on a University of Edinburgh computer, with anonymised data from your local hospital record. We keep a note of your name and contact details, as well as the unique database number, in a very secure password-protected computer in the University that can only be accessed by a small number of highly trained and approved staff. It is important that we be able to identify your record in the database in case, for example, you ask us to remove your entry from the database, or if you join a study and have another scan in future. 

The scan may be analysed by computer as part of testing new methods to find features that predict future diseases, such as stroke or other complications. The anonymous scan information may be shared with other medical researchers working on relevant research projects to answer new research questions or test new methods.

Every few years, we will ask the Scottish NHS Information Services Division to match your scan with your health information that they hold centrally (like new diagnoses or visits to hospital), to find out about any new symptoms or important new diagnoses. 

The Database is approved by the West of Scotland Research Ethics Committee (REC reference 20-WS-0094) who specialise in health databases for research. They review a report each year of what we have done with the database and review the data management. The original creation and research uses of the database were also approved by NHS Lothian, the Caldicott (data) Guardian and the NHS Privacy Advisory Committee.

The scans are held on a secure, password-protected computer and the data are managed by highly trained database experts at the University of Edinburgh, a leading UK University in Health Care Information. The matching of scans with central health records will be done by NHS approved staff using approved data management practices to protect your identity. The researchers will not know your identity.  We comply with the new EU General Data Protection Regulation (GDPR), along with the new UK Data Protection Act, and are supplying you with more information in a separate sheet.

We may be doing new research projects in future that you might be interested in joining. We would like to ask your permission to send you information about these studies, in case they are of interest to you. There is a box on the consent form where you can indicate if you agree or not. Agreeing to be contacted does not mean that you have to agree to take part in new studies. It is entirely voluntary.

If you would like to discuss this database with someone who is not involved with it, more information is available from Prof Andrew Farrall, a Consultant Neuroradiologist and Professor of Neuroradiology in NHS Lothian and the University of Edinburgh.

• Tel: 0131 536 0800
• Email: Andrew.Farrall@nhslothian.scot.nhs.uk

If you wish to make a complaint about the study please contact NHS Lothian:

• Address: Patient Experience Team, 2 – 4 Waterloo Place, Edinburgh, EH1 3EG
• Email: feedback@nhslothian.scot.nhs.uk
• Tel: 0131 536 3370

• Principal Investigator: Prof Joanna M Wardlaw, CBE, FMedSci, FRSE
• Statistician: Dr Francesca Chappell, PhD
• Senior Data Manager: Dr Dominic Job, PhD
• Senior Research Radiographer: Isla Mitchell, BSc
• Superintendent Radiographer: Charlotte Jardine, BSc
• Data Custodian: Prof Ian Marshall, PhD
• Independent/external member: Professor Andrew Farrall, PhD, FRCR, NHS Lothian
• Lay representative:

• Contact: edimaging-imagedatabanks@mlist.is.ed.ac.uk or Prof Joanna Wardlaw (joanna.wardlaw@ed.ac.uk)
• Address: Edinburgh Imaging Facility RIE, 57 Little France Cresent, Edinburgh, EH16 4TJ