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Opt Out: Using Your Historical Scans for Scoliosis Research

Researchers at Aston University and The Royal Orthopaedic Hospital NHS Trust are developing a smartphone app to help detect scoliosis (curvature of the spine) earlier in young people. Earlier detection would allow better all-round management.

To train the app, we need to use historical X-ray, MRI/CT scan, and back photograph data. We are proposing to use anonymised scans collected as part of routine care at The Royal Orthopaedic Hospital between 1 January 2008 and 31 December 2017.

You have the right to opt out. This page explains what that means and how to do it.

Who does this affect?

This may affect you if you (or your child) received treatment for scoliosis at The Royal Orthopaedic Hospital NHS Trust at any time between 1 January 2008 and 31 December 2017.

What data will be used?

We plan to use:

•        X-rays

•        MRI and CT scans

•        Topography Photos of the back

All images will be fully de-identified before being used in research. This means all personal details will be removed, and no one will be able to link the images back to you.

How to opt out

You can opt out by:

•        Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

•        Phone: 0121 812 3310

•        Post: Research and Development Department, The Royal Orthopaedic Hospital NHSFT, Bristol Road South, Northfield, Birmingham, B31 2AP

•        In person: Ask for the Research and Development Department at The Royal Orthopaedic Hospital NHSFT

Please provide your name, date of birth and if known NHS or Hospital R Number when opting out.

National data opt-out

If you have already registered for the NHS National Data Opt-Out, your data will automatically be excluded from this study. You do not need to contact us separately.

 

Frequently asked questions

Will researchers be able to identify me?

No. Your scans will be fully de-identified — all personal details removed — before being used in research. Even if images are used in published work, no one will be able to link them back to you from the scan itself.

Will opting out affect my care?

No. Choosing to opt out will have absolutely no impact on your current or future care at The Royal Orthopaedic Hospital or any other NHS service.

Why are researchers using my data without asking first?

This study uses an opt-out model, supported under Section 251 of the NHS Act 2006 (Regulation 5 of the Control of Patient Information (COPI) Regulations 2002). This support has been granted by the Health Research Authority (HRA) on advice from the Confidentiality Advisory Group (CAG), an independent body that scrutinises applications to use confidential patient information without consent. Because the dataset covers thousands of patients over nearly a decade, it is not feasible to seek individual consent. An opt-out approach is a recognised and ethically reviewed method for research using historical clinical data, and CAG’s approval ensures that appropriate safeguards are in place.

What is the role of the Confidentiality Advisory Group (CAG)?

CAG (the Confidentiality Advisory Group) is an independent advisory body established under Section 252A of the NHS Act 2006. It advises the Health Research Authority (HRA) on requests to access or use confidential patient information without individual consent for research and other medical purposes. This study has received Section 251 support — specifically under Regulation 5 of the Control of Patient Information (COPI) Regulations 2002 — granted by the HRA on advice from CAG. This means that CAG independently reviewed and approved the safeguards in place for this study, including the requirement for this opt-out notification process, before support was granted.

What will the research achieve?

The aim is to develop a smartphone app that can detect scoliosis earlier in teenagers. Earlier diagnosis means more young people could receive better all round management, improving quality of life and reducing the need for invasive procedures.

Who do I contact with questions?

Chief Investigator: Prof. Adrian Gardner

Email: This email address is being protected from spambots. You need JavaScript enabled to view it.

Phone: 01218123372

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https://roh.nhs.uk/services-information/spines/opt-out-using-your-historical-scans-for-scoliosis-research

The Royal Orthopaedic Hospital | T: 0121 685 4000 | roh.nhs.uk