Information alert

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The British Spine Registry is a database designed to collect information from patients who have spinal surgery in the UK. The Registry’s aim is to collect data about the surgeries and monitor the results. This will lead to an increased understanding of patient experience and allow Consultants to analyse surgical outcomes.

If you agree to take part in the data collection, you are providing valuable information for your Consultant about your progress and outcomes of your procedure. This could also help future patients with similar conditions to yours.

The information will be used to improve patient care and safety. NHS England, the governing body for the day to day running of the NHS, mandates that with patients’ permission, hospitals enter all spinal surgery data on the British Spine Registry.

Patient-reported outcome measures (PROMs) are an excellent way to record your physical abilities, quality of life, and general well-being before and after an operation on your spine. Once you have been given a surgery date, a member of the British Spine Registry team within the neurosurgery department at UCLH will contact you regarding the completion of questionnaires (PROMs).

If you consent to data collection, you will be asked for an email address for the questionnaires to be sent to. If you do not have access to an email address, we will send the questionnaires to you by post, including a stamped, pre-addressed envelope, so you can return your answers. The questions should be answered before your surgery, and they will take 10-15 minutes to complete.

Following your operation, the questionnaires will be sent to you again every three months, for one year. Your answers will be monitored and analyzed for changes in your physical abilities, quality of life and well-being, which will help your consultant evaluate your condition.

As NHS England mandates that all spine surgery data is stored on the Registry, your surgical procedure information will be stored on the database. You do however have the right to ask for your information to be anonymised, meaning no identifiable data is stored. Only your birth year, gender, and first part of your post code are linked to the surgical procedure form. If you are initially happy for your personal details to be stored on the system, but later change your mind and want it to be anonymized, you can ask for that to be done.

If you do not want any information regarding your procedure stored on the database, including anonymized information, please get in touch using the details provided (see contact information) You are under no obligation to consent to data collection.

This decision will have no effect on your hospital care. If you do consent initially but later you change your mind, you can withdraw your consent at any time. This will not have any effect on your hospital care.

Your personal details, surgical information and questionnaire outcome scores are held securely on the British Spine Registry database, commissioned by Amplitude (a company specialising in product analysis software).

A member of the British Spine Registry administration team from the National Hospital for Neurology and Neurosurgery will contact you regarding the completion of questionnaires. If you have any questions and would like to speak to someone, please feel free to get in touch with us or visit the website for more information.

Website: www.britishspineregistry.com
Email: customer-support@amplitude-clinical.com
Telephone: 0333 014 6363
Address: Amplitude Clinical, 2nd Floor, Orchard House, Victoria Square, Droitwich, Worcestershire, WR9 8QT
UCLH cannot accept responsibility for information provided by external organisations

Direct telephone to British Spine Registry admin team at UCLH: 020 3448 3543, 020 3448 3004
Switchboard: 020 3456 7890 (or 0845 155 5000 - premium call rates apply)
Extension: 83543
Fax: 020 3448 3340
Address: British Spine Registry Admin Team, Box 3,
The National Hospital for Neurology and Neurosurgery,
Queen Square, London,
WC1N 3BG.

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Page last updated: 03 May 2024

Review due: 01 June 2024