The Scottish Brain Health Register
Research type
Research Database
IRAS ID
150791
Contact name
Catherine Pennington
Contact email
Research summary
The Scottish Brain Health Register (SBHR)
REC name
Scotland A: Adults with Incapacity only
REC reference
17/SS/0061
Date of REC Opinion
27 Jul 2017
REC opinion
Further Information Favourable Opinion
Data collection arrangements
During the patient’s clinical appointment and if their clinician feels it is appropriate, then the register will be introduced. The clinician will provide the patient with an information pack and consent form. This approach is then recorded within the register system. Later, if the patient consents to the research register, then this consent is also recorded. If the patient consents both the research team and clinical team will have access to the patient’s notes. If consent is not given then these notes will remain exclusively available to the clinical team.
Patients may also refer themselves to the register after hearing about it via word of mouth. The register will also accommodate these patients. These patients’ details will only be accessible to the research team, and not the clinical team at each site.
At memory clinics, the contact and demographic details of the patients who have consented to the SBHR will be imported by a dedicated data manager onto SBHR. Only individuals records who consent to the register will be available to the research team. Data will include medical/medication history, diagnosis, clinical notes and completed assessments. Where agreed, data that are collected as part of taking part in SBHR studies is also recorded once a study is complete.
Research programme
Dementia is a syndrome resulting from a range of diseases of the brain, which progressively affects cognitive function and ultimately leads to the loss of the ability to perform daily activities. Alzheimer’s dementia is the most common form of dementia and accounts for over 70% of cases and it is estimated that it affects 8-10% of individuals over 65, rising to over 40% of those above 85. There are more than 35 million people worldwide living with dementia and this number is expected to double by 2030 to 65.7 million and more than triple by 2050 to 115.4 million. Currently there are no disease modifying treatments and studies to find these treatment are urgently needed. This register aims to connect potential research participants with studies, thereby enabling researchers to successfully recruit suitable, motivated participants into these trials to find effective treatments. It also connects this clinical population to other studies outwith clinical trials, so that there is an opportunity for anyone to take part in a wide portfolio of studies. Moreover, it hopes to generate data that can be used for the purposes of secondary analysis and to better characterise the population of people living with dementia and other stages of neurodegenerative diseases in Scotland.
Research database title
The Scottish Brain Health Register (SBHR)
Establishment organisation
Centre for Dementia Prevention
Establishment organisation address
University of Edinburgh
9A Bioquarter, 9 Little France Road
Edinburgh
EH16 4UX