Written question asked by Christopher Chope (Conservative) on Tuesday, 27 March 2012, in the House of Commons. It was due for an answer on Monday, 16 April 2012. It was answered by Simon Burns (Conservative) on Monday, 16 April 2012 on behalf of the Department of Health.

Leukodystrophies

Question: (2) what steps he is taking to promote the early diagnosis of Adrenoleukodystrophy.

Answer: The UK National Screening Committee (UK NSC) advises Ministers and the national health service in all four countries about all aspects of screening. The UK NSC has not considered either antenatal or newborn screening for leukodystrophies because of the lack of peer reviewed evidence relating to the test and treatment.The UK NSC regularly reviews policy on screening for different conditions in the light of new research evidence becoming available. Where stakeholder organisations or individuals feel that there is enough evidence published in peer reviewed journals to consider screening for a condition they can submit a policy proposal to the UK NSC.Early diagnosis is important for any rare genetic condition including Adrenoleukodystrophy. NHS genetics services are among the best in the world and the Government continue to support the development and adoption of genomic technology in health care. In January 2012, the Human Genomics Strategy Group published their report 'Building on our inheritance: Genomic technology in healthcare'. The report recommended a plan of action to ensure that the United Kingdom maintains its lead in this area. Government have welcomed this report and the Department of Health is working with its partners to develop a shared strategic framework to implement its recommendations.

Secondary information