The NHS Proton Registry records data about patients referred for NHS proton beam therapy: their characteristics at referral, their treatment and their outcomes. Its purposes are:
Safety and effectiveness surveillance of the national proton beam therapy service, including late effects that may emerge many years after treatment.
Approved research conducted under the Registry's access and approval process.
Who runs the Registry
The Registry is operated by The Christie NHS Foundation Trust, through its Proton Clinical Outcomes Unit. It is designed to bring together records from the two NHS treating centres, The Christie and University College London Hospitals NHS Foundation Trust (UCLH), and from the NHS Proton Overseas Programme.
Proposed photograph: The Christie Proton Beam Therapy Centre, Manchester (building exterior, no people in view)
Proposed photograph: University College London Hospitals proton beam therapy centre (building exterior, no people in view)
History
Since 2008, the NHS Proton Overseas Programme has sent eligible NHS patients abroad for proton beam therapy, initially because no UK centre existed. The Christie's proton beam therapy centre opened in 2018, followed by UCLH's. The Registry brings these cohorts together into a single national resource and includes 1,367 patients from the Proton Overseas Programme.
Governance
Applications to use Registry data will be considered by the NHS Proton Registry Data Access and Management Committee (DMAC), a subcommittee of the Joint NHS Proton Beam Therapy Data Committee. Its terms of reference are being finalised.
Legal basis
Roadmap
We are developing the Registry step by step:
Now: this website, the Registry's legal footing, and publication of the data catalogue.
Next: the researcher access process in full operation, with application forms and published decisions.
Later: richer outputs, such as a publications register, aggregate dashboards, and interoperability with international data standards (OMOP).