Consultation on Newborn Screening for Thalassaemia

Background

While there is not a specific newborn Screening Programme for Thalassaemia in the UK at present, four thalassaemias that may be clinically significant (β-thalassaemia major, β-thalassaemia intermedia, and Hb E/ β-thalassaemia, and Hb H disease), are detected as 'by-products' of newborn screening for sickle cell disease, using the newborn blood spot.

The 2011 report by Allaby and Pittam independently reviews the case for newborn screening for the four thalassaemias detected as 'by-products' of newborn screening for sickle cell disease. The report leaves it open as to whether these conditions meet the NSC criteria, except in the case of HbH disease which is not considered to meet the criteria.

Purpose of the consultation

This consultation invites feedback on the Newborn Screening for Thalassaemia  report. We would welcome comments on any part of the report, but have listed some specific questions which may help you to structure your response, and on which it may be helpful to have your views. The questions may be found in the Response Template.

Consultation process

Please send your comments on the questions in the Response Template, and any additional feedback by email.  If you are unable to submit by email, comments may be posted to Dr Patricia Connell at this address.

All comments must be received by 21st March 2012.

When replying to the consultation, please state if you are happy for your views to be made public on the Programme's website.