Current UK NSC recommendations > Canavan's disease

The UK NSC recommendation on Canavan's disease screening in newborns (archived)

This recommendation is no longer active

Date of deactivation 14 January 2014
Reason for deactivation The policy was deactivated from the policy review cycle following the review conclusions and agreement from stakeholders that testing target populations would be more appropriate than universal screening.
Recommendation Systematic population screening programme not recommended
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Universal screening for Canavan's disease is not recommended. Testing should be available to individuals who meet the relevant clinical criteria.


Why is screening not recommended by UK NSC?

A whole population, carrier screening programme for Tay Sachs Disease, Canavan Disease and Familial Dysautonomia is not recommended.

While these conditions represent serious inherited health problems, they are very rare and the risk of inheritance is concentrated in the UK's Jewish population. As such, test coverage in this small, high risk population is not within the remit of the UK NSC.

There is evidence that carrier information is valued by stakeholders and that carrier testing has been successful in preventing the birth of affected babies when targeted within this population.

The UK NSC is supportive of work to ensure that an NHS testing service is available to those wishing to access it.

More about Canavan's disease

Canavan's disease is a rare genetic, degenerative disorder of the nervous system. It is one of a group of genetic disorders called the leukodystrophies.

In Canavan's disease, there is widespread degeneration of the white matter in the brain leading to loss of sensory, motor and intellectual function.

» Read more about Canavan's disease on the Contact a Family website

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