Annual Report
The National PNH service UK is commissioned by NHS England as a specialised service.
We report annually our outcome measures for the year. The highlights of these are below:
April 2024- March 2025:
Combined number of patients within the service: 1146
Leeds
| 2025 | England | Scotland | Wales | N. Ireland | Other | Total |
|---|---|---|---|---|---|---|
| On Complement Inhibition | 203 (33.7%) | 42 (64.6%) | 23 (67.7%) | 6 (35.3%) | 1 (25%) | 275 (38.1%) |
| Not on Complement Inhibition | 384 (63.8%) | 22 (33.9%) | 10 (29.4%) | 11 (64.7%) | 3 (75%) | 430 (59.6%) |
| Clinical Trial / Non NHS Funded Complement Inhibition | 15 (2.5%) | 1 (1.5%) | 1 (2.9%) | 0 (0%) | 0 (0%) | 17 (2.4%) |
| Total | 602 | 65 | 34 | 17 | 4 | 722 |
Kings
| 2025 | England | Scotland | Wales | Total |
|---|---|---|---|---|
| On Complement Inhibition | 164 (38.7%) | 0 | 0 | 164 (38.7%) |
| Not on complement Inhibition | 253 (59.7%) | 0 | 0 | 253 (59.7%) |
| Clinical Trial / Non NHS Funded Complement Inhibition | 7 (1.6%) | 0 | 0 | 7 (1.6%) |
| Total | 424 | 0 | 0 | 424 |
Number of patients commenced on complement inhibitor as a clinical emergency (Leeds and Kings):
4 due to thrombosis.
Video appointments:
96 between April 2024 and March 2025: In the 2025 patient survey, 96.5% of patients reported experiencing no difficulties with the video clinics.
Indications for starting treatment:
| Patients commenced on complement inhibition 2024 – 2025 Leeds and Kings | |
|---|---|
| Exceptional (MDT) | 5 |
| Pre-BMT | 2 |
| Haemolysis (Anaemia) | 28 |
| Pregnancy (Eculizumab only) | 0 |
| Thrombosis | 4 |
| Total | 39 |
Innovations since 2024:
- Iptacopan approved
- Danicopan approved for use with C5 inhibitor
- Crovalimab approved