What is the SBS registry?
The SBS registry is a waiting list for people who want to join our research studies. We collect details about you to pair you with current or future research projects. If we don’t currently have a suitable study for you, we can retain your information to match you to future studies.
What is the SBS cohort study – called IONA?
The SBS Cohort Study – IONA – is a long-term research initiative designed to monitor and analyse brain health over several years. Its goal is to identify and monitor early signs of diseases that could lead to dementia over several years.
Who is eligible for the IONA cohort study?
The cohort study is open for people aged 50 years and above, who live in Scotland, and have someone who can join with them as a study partner.
We are currently looking for three groups of people:
- People with no memory or thinking problems,
- People with mild memory or thinking problems (including people who have a diagnosis of mild cognitive impairment)
- People who are living with dementia in its early stages.
How long will I have to be involved in the IONA cohort study?
The cohort involves yearly on-site visits and remote check-ins every six months. Your participation in the study can span up to 10 years, depending on when you enrol, requiring one in-person visit annually. You can choose to withdraw from the study at any given point.
Where will it be? And can I do it remotely?
We are currently open for study visits at our Edinburgh centre (Scottish Brain Sciences). We plan to open new centres across Scotland from 2024 onwards. If you would like to register your interest for another centre, please get in touch.
Will you share your findings with me?
We can share the results of participants’ research tests, particularly if they hold clinical significance and require further action.
Do you provide a dementia diagnosis?
As a clinical research organisation, we are not able to provide diagnoses. However, we will share your test results with you and your GP, should you wish us to do so. You can then engage in a discussion with your GP regarding this information.
Will my expenses for my IONA visits be covered?
Reasonable travel expenses will be reimbursed. If you have questions about your specific situation our team would be delighted to speak to you before you join one of our studies.
Do I have to be part of the SBS registry or the IONA cohort study to gain access to other drug trials ran by SBS?
All those who register interest in our research studies will be considered for any open trials we have available. Participants in the cohort study may also be regularly matched to other study opportunities run by Scottish Brain Sciences. These studies may involve exploring new medications or testing new methods for diagnosing diseases that contribute to dementia. While certain studies may be exclusively available to those in the cohort, others will be open to any eligible individual in our SBS registry.
How to you decide which study I might be suitable for? And how is eligibility assessed?
The determination of which study is suitable for an individual is based on a careful consideration of the specific criteria outlined in each clinical trial’s inclusion and exclusion guidelines. Inclusion criteria, such as age or specific diagnosis, help identify participants with the desired characteristics, while exclusion criteria, such as specific medications or medical history, help rule out individuals for whom the new treatment may not be suitable.
We collect relevant information during our pre-screening communication with you. By thoroughly understanding your background and medical history, we aim to match you with studies for which you meet the eligibility requirements. This ensures a thoughtful and personalised approach to matching you to further trials.
How is SBS funded?
We are backed by one of the world’s leading healthcare venture philanthropy organisations and they have a minority share of the company. We also earn financial income through key partnerships with other research organisations and by delivering clinical trials of new tests and medicines.
