HEAD-TBI Privacy notice

Privacy Notice for ‘HEalth And Dementia outcomes following Traumatic Brain Injury (HEAD-TBI)’

The University of Glasgow will be the ‘Data Controller’ of personal data processed in relation to this study, which is performed in the public interest. This privacy notice will explain how the University of Glasgow will process your personal data.

Study background

There is growing recognition that traumatic brain injury can lead to a lifelong impact on health, including a higher risk of dementia. Indeed, it is estimated that around 3% of dementia cases in the community are due to brain injury. Notably, poor health outcomes after brain injury include not only dementia. A wide range of conditions are observed in brain injury survivors, many of which also increase dementia risk. As such, our theory is that the increased dementia risk associated with brain injury may be due to both the direct effect of the injury on the brain and the indirect effects of wider, poor health outcomes after brain injury which, in turn, increase dementia risk.

To test this theory we propose a series of interlinked studies titled “HEalth And Dementia outcomes following Traumatic Brain Injury (HEAD-TBI)”. These studies are designed to compare differences in health between people with and without a history of brain injury and how these might contribute to dementia risk. This will give us a better understanding of the link between traumatic brain injury and dementia, which will help us identify ways that we might act to reduce this risk.

The aims of HEAD-TBI, therefore, are to:

– analyse risk of dementia and other neurodegenerative diseases in those with a history of traumatic brain injury compared to uninjured individuals from the general population.

– analyse common causes of death and common health issues, including mental health, in those with a history of traumatic brain injury compared to uninjured individuals from the general population.

– analyse brain scans to look for changes that may help us understand who is most at risk of dementia following a traumatic brain injury.

HEAD-TBI is supported after application to the Chief Scientist Office (CSO) for an early postdoctoral research fellowship to pursue a study investigating lifelong health outcomes following traumatic brain injury. Approvals have been obtained from the University of Glasgow College of Medical, Veterinary and Life Sciences Research Ethics Committee.

Why we need your data

We are collecting data from Public Health Scotland, such as hospital admission, and death certification data, in order to better inform on neurodegenerative risk and other lifelong health outcomes in individuals with a history of traumatic brain injury. We will also be accessing magnetic resonance (MR) and computerised tomography (CT) brain scan images. We will be collecting this data for individuals in the general population with prior documented exposure to traumatic brain injury, as well as individuals with no history of traumatic brain injury – to be used as a comparison group.

Legal basis for processing your data

Approximately 850,000 people in the UK are living with dementia, with an annual cost to society of £26billion. Establishing risk factors for neurodegenerative disease, and acting to reduce these risks is a top public health priority. The processing of this data is therefore, to perform a task which is in the public interest.

What we do with the data and who we share it with

All data is anonymised to researchers, and will be analysed by members of the HEAD-TBI study group, in the United Kingdom.

How long we keep data for

Data will be retained for 10 years. After this time, data will be securely deleted.

Further information

If you require further information about this study, or how we process personal data, please email; ‘neupsy-ins-gbirg@glasgow.ac.uk’.

Complaints

Should you wish to exercise your data rights and raise a complaint regarding our use of personal data in this study, you can contact the University of Glasgow Data Protection Office, who will investigate the matter. The Data Protection Office can be contacted at: dataprotectionofficer@glasgow.ac.uk