SHARE – The Scottish Health Research Register and Biobank was established in 2012 as a joint venture between the universities of Edinburgh and Dundee. It has already signed up almost 300,000 volunteers across Scotland, making it the largest register of volunteers in the UK.
The initiative keeps a record of people aged 11+ who are willing to participate in future health research. It takes less than a minute to sign up and agree to allow SHARE to use coded data in your NHS record to check your suitability for upcoming studies. By helping researchers quickly find eligible participants to approach about joining their studies, SHARE helps facilitate pioneering medical research.
SHARE also seeks permission to store any leftover blood, that volunteers have had taken for routine clinical tests, to be used for additional research and testing, such as anonymised genetics and biomarker research.
Professor Emeritus of Primary Care eHealth Brian McKinstry works at the University’s Usher Institute and is the Director of SHARE. He hopes to see it expand: “One of the biggest problems medical researchers have is finding suitable people to take part. The irony is that most people would be willing to help if it was in an area relevant to them or their family, and if they knew about it.
“If you join SHARE, you allow the NHS to use your electronic data to determine if a research project is a good fit for you. If you are, SHARE contacts you and tells you about the project. Only if you agree are your details passed to the research team.”
Participation
Getting involved in research can range from answering surveys, to having your blood tested, testing new medical devices or phone apps, or participating in full studies. If you join SHARE, you can expect to be contacted two or three times a year but there is no obligation – it is always your choice whether to take part.
“People in Scotland who have signed up have already helped in the development of new treatments for conditions including Covid-19, cancer, stroke, diabetes, arthritis, COPD, dementia and mental health issues,” said Professor McKinstry.
“Recently, participants helped pioneer a vital diagnostic test for COVID-19. The Epitogen Immunity test will detect when the body’s immunity to coronavirus is reduced and predict when a booster may be required. This game-changing antibody test was developed with the help of blood samples from SHARE participants who had not contracted flu or COVID-19.”
Professor McKinstry is keen to reassure anyone worried about confidentiality that medical records remain secure at all times: “Your electronic records are currently held within the safe-haven of the NHS. They will never leave this stronghold. Your data does not leave the NHS, only the fact that you may be suitable for a particular study is passed to SHARE.”
SHARE is part of NHS Research Scotland and NHS Scotland, which both promote and support excellence in health research to help patients benefit from new and better treatments. It also has the support of the Scottish Government.
You can find further information, and register to get involved, online: SHARE – The Scottish Health Research Register and Biobank