Scottish Brain Health Register (SBHR)

Image

What exactly is SBHR?

Finding volunteers for research studies is a big challenge. One way to improve recruitment to studies is to have a register of people who are interested in research. SBHR does just that. It is an electronic system, meaning volunteers’ names and some basic details are kept on a computerised database. This saves time and money that can be used elsewhere in research, with the added benefit that we are matching people to research that interests them!

But SBHR is unique compared to other research registers. It has the potential to be used as a research tool itself! Clinical data, such as brain imaging, cognitive test scores, or medication data for example, may be stored on the database, meaning that researchers can use the data on SBHR to better characterise neurological disorders and to answer research questions without the need for the person to attend a testing facility for repeated tests.

In the future, SBHR sites will appear across Scotland generating large amounts of data which will help answer many research questions.

The aim of this is to speed up research and improve knowledge, diagnosis and treatment, and ultimately, prevent dementia.

SBHR and The University of Edinburgh

SBHR is overseen by Edinburgh Dementia Prevention, a department within The University of Edinburgh, who collaborate with NHS Scotland to embed SBHR into the Memory and Treatment Services (MATS) clinics. MATS clinics provide assessment and support for people experiencing memory and thinking difficulties.

Who can sign up to SBHR?

SBHR is open to everyone, and everyone is suitable for research.  You can register if you are above 18 years of age. SBHR registrants include those with and without neurological conditions including  Alzheimer's disease, dementia, or mild cognitive impairment, for example. Different research studies require different types of people, including those with no neurological conditions at all. We welcome everyone interested in brain health research to sign  up.

What happens when I sign up to SBHR?

Your contact details will be stored with us securely. If a research study arises that may be of interest to you then a member of SBHR or someone directly involved in the research study will contact you to tell you more about the study and if you would like to participate.  It is important to know that  signing up to SBHR does NOT mean you have to participate in any study. The choice will always be yours on a study-by-study basis. You are also free to leave the register at any time.  The frequency with which you will be contacted about studies is low. 

What studies have SBHR been involved with?

People registered on SBHR have been involved in a number of different studies. These include EPAD, EPAD Scotland, GRADUATE study, DPUK Harmonisation Study, SPeAK Study, AC Immune, Dementia 'Buddy Scheme', and more.  You can read bout some of these in Our Research pages.

If you would like to register on SBHR or would like further infomration then Contact Us directly and we will send you the information sheets and consent form.