Canavan's disease (policy currently in consultation)
The UK NSC policy on Canavan's disease screening in newborns
More Information
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
Policy Position
Screening for Canavan's disease should not be offered.
When replying to the current consultation, please use the comments form that you can download at the bottom of this page.
This policy is currently being reviewed as part of the UK NSC's regular review cycle of all policies.
The review process began in Oct 2010 and is estimated to be completed by Mar 2013.
» Download the expert review for Canavan's disease (PDF document, 618KB)
The UK NSC welcomes comments and feedback on the expert review during the consultation period that lasts from 4 May 12 until 3 Aug 12. Please send comments to Esther Rose
When replying to a consultation, please state whether you are happy for your views to be made public on the UK NSC website or whether you would prefer them to be seen by UK NSC members only. We will assume comments can be published on the website unless told otherwise.
Evidence Supporting the Policy
A review against NSC criteria has been commissioned.
Stakeholders
Genetic Alliance UK
Royal College of Midwives
Royal College of Paediatrics and Child Health
The stakeholder groups will be involved when the policy is next reviewed. If you think your organisation should be added, please contact us.
Related documents
Consultation submission comments form - Canavan's disease (Word document, 48KB, 15/05/12)Knowledge update on screening for Canavan disease (updated October 2010) (PDF document, 37KB, 24/08/11)
