The British Spine Registry
What is a registry?
A registry collects large volumes of valid clinical and patient outcome data for all who undergo particular operations. The information collected is analysed to increase our understanding of an operation’s success.
The British Spine Registry (BSR) is a web-based database for the collection of information about Spinal Surgery in the UK.
It helps your Spinal Surgeon and other medical practitioners understand more about spinal procedures and how to better improve patient care for you and future patients.
The data is also used to influence decision making, to improve patient safety and ensure your surgeons and hospitals have feedback about their performance so they can continuously improve.
What information is collected?
Details of your spinal diagnosis, operation and complications will be recorded on the BSR by your hospital. Personal details included, but not limited to, your name, address and telephone number are gathered, but they will never be shared with any other third party or used for anything other than anonymised research and data analysis.
What is Consent?
Your consent will allow the British Spine Registry (BSR) to examine details of your diagnosis, surgical procedure, any complications, your outcome after surgery and your questionnaires. These are known as ‘service evaluations’ or ‘audits’. You will be consented separately for any other research studies where specific data may be collected using the Registry.
What do I have to do?
If you choose to consent, you’ll be asked for your email address or that of a parent or guardian. At intervals before and after your spinal procedure, you’ll be emailed some simple questionnaires to complete. These questionnaires are important for your surgeon to understand what affect your treatment may have had on your activity levels, your symptoms and your quality of life.
Do I have to give my consent?
No. If you do not consent, your personal details will still be stored on the BSR, but without any outcome data. This is in order for clinicians to capture the details of all of their operations. If you do not consent to the BSR holding your personal details, please contact the spine registry team: firstname.lastname@example.org
Is my information safe?
Your personal details are kept confidential at all times. Very strict rules and secure procedures are in place to ensure that your information is kept safe.
You can ask for a copy of your personal data held on the BSR by writing to your Consultant.
Mr Al-Mahfoudh is grateful to all his patients who agree to take part in this research, usually this is completed by email.
You will be asked to complete a few questionnaires that will be sent to you at varying intervals before and after your surgery. This can be over a few years to monitor long-term outcomes.
These should not take more than a few minutes to complete and will ask you about your pain levels, and the benefits, or otherwise, of any procedures that you have had undertaken.
Your consent will be requested, and if you do not consent to take part or would like your data removed at any time, then this is perfectly acceptable, however we would appreciate your cooperation with this research.