Screening means testing people for early stages of a disease before they have any symptoms. For screening to be useful the tests:
- need to be reliable at picking up cancers
- overall must do more good than harm to people taking part
- must be something that people are willing to do
Screening tests are not perfect and have some risks. The screening programme should also be good value for money for the NHS.
No screening available
There is no national screening programme because:
- this condition is very rare, so many people would have unnecessary tests
- the benefits don't outweigh the costs
With uncommon diseases, it is most cost effective to screen people who are thought to be at a higher risk. But first we must be sure that we know who is at higher risk.