Information for researchers
What the Registry offers
A national, longitudinal dataset of patients referred for NHS proton beam therapy, covering demographics, diagnosis, treatment (including dose and fractionation) and outcomes. It spans patients from The Christie, UCLH and the NHS Proton Overseas Programme. See our data for the catalogue.
How access works
- Enquire. Contact the Registry with an outline of your project. See contact us.
- Apply. Complete a data access application describing your purpose, the data items you need, and your organisation's governance arrangements.
- Review. Applications are reviewed by the Registry's Data Access and Management Committee (DMAC) against necessity, proportionality and the Registry's approved purposes.
- Agreement. Approved projects sign a data access agreement.
- Access. By default, the Registry team produces anonymised results for your project. By exception, your analyst may work with pseudonymised records inside the Registry's trusted research environment, where results are checked before they leave. Release of pseudonymised records outside that environment is an exceptional route needing full committee review. See how we protect data.
What we do not do
- We do not give researchers patients' names, NHS numbers or addresses. The Registry does not hold names at all.
- We do not let researchers hold the key that links coded records back to patients.