Together, we can improve patient care through knowledge
What is a
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 clinical understanding of an operation’s
The British Spine Registry (BSR) is a
web-based database, for the collection of information about spine surgery in the UK.
It helps your Consultant Spine 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
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.
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'. The information
collected in this registry may also be shared with NHS commissioning organisations (NHS England and Clinical Commissioner Groups) to ensure they can meet their statutory duties. When this is
required, NHS Digital collect your identifiable information using their powers under the Health and Social Care Act 2012 as directed by NHS England. The data collected will then go through a process
of pseudonymisation (de-identification) before being provided to commissioning organisations under a strict governance framework. You will be consented separately for any other research studies where
specific data may be collected using the Registry.
What do I have to
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
No. If you do not consent, your personal
details will not be stored on the BSR. Your clinician may still record clinical information, but in an anonymised form. If you do not consent to the BSR holding your personal details,
please contact us.
Is my information
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.