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Study of tumours in UK Ataxia Telangiectasia patients

In April 2021 we uploaded a notice from Malcolm Taylor saying that he and his colleagues at the University of Birmingham would like to undertake a new study of the tumours that occur in AT patients in order to better understand the range of tumour types that people with AT develop.  He is doing this with our approval and help.

Recently, they have informed the Society how they are progressing.

Among the approximately 180 families in the UK currently with AT, they have identified 19 individuals (3 children and 16 adults) who have a tumour. In another 50 families where an individual with AT has died in the past 10 years they have identified 23 who had a tumour; so 42 tumours in total.

If you would like to help with this study please send your consent, if you are agreeable, to the AT Society when it is requested.

On the ‘information request sheet’, provided, it would be very helpful if you can give the name of the hospital where the person was treated.

Because AT is such a rare disease, every return is important.

Yours sincerely

Kay Atkins

Head of Services, Ataxia telangiectasia Society of UK

Information request form

Adult opt out form