Our data
The Registry holds structured clinical data about patients referred for NHS proton beam therapy. This page summarises what it holds.
Catalogue last updated: 2026-10-21. All figures on this page are aggregate counts.
Headline figures
| Measure | Value |
|---|---|
| Patients in the Registry | 5,676 |
| Proton Overseas Programme patients | 1,367 |
| Treated at The Christie | 2,013 |
| Treated at University College London Hospitals (UCLH) | |
| Years covered | 2008 to present |
Data catalogue
Demographics and identifiers
Core patient characteristics, and the identifiers needed to link records correctly and prevent duplicates. The Registry does not hold patients' names. Identifiers are kept apart from the data used for analysis.
| Item group | Status | Notes |
|---|---|---|
| Identifiers (NHS number or other national identifier, proton patient and referral numbers, date of birth, postcode at referral) | Collected | Used for linkage and data quality; removed from research datasets |
| Demographics (age, sex, ethnicity, area-based deprivation) | Collected | Available to approved projects in pseudonymised form |
Diagnosis
Primary diagnosis, anatomical site and relevant tumour characteristics.
| Item group | Status | Notes |
|---|---|---|
| Primary diagnosis and morphology | Collected | |
| Stage, grade and laterality | Partial |
Treatment
Proton beam therapy treatment details, including dose, fractionation and dates, plus relevant concurrent treatment.
| Item group | Status | Notes |
|---|---|---|
| Proton beam therapy course (dose, fractions, dates, treatment centre) | Collected | Dose reporting definitions under review |
| Concurrent systemic therapy | Partial |
Outcomes and follow-up
Survival status, disease status at follow-up, and late effects, which support the Registry's safety and effectiveness purpose.
| Item group | Status | Notes |
|---|---|---|
| Survival status and disease status | Collected | As reported by providers at each submission |
| Late effects and toxicity | Planned |
Patient-reported outcomes
Patient-reported outcome measures, where collected by treating centres.
| Item group | Status | Notes |
|---|---|---|
| Patient-reported outcome measures | Planned |