MRC Centre of Epidemiology for Child Health
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UK Newborn Screening Programme Centre (UKNSPC)
Professor Carol Dezateux is the Strategic Co-Director of the UK Newborn Screening Programme Centre, which she helped to set up with Dr Jane Collins and Professor Sandy Oliver.
The UK Newborn Screening Programme Centre is responsible for developing, implementing and maintaining a high quality, uniform newborn blood spot screening programme for all newborn babies and their parents.
Newborn blood spot screening identifies babies who may have rare but serious conditions. Most babies screened will not have any of the conditions but, for the small number that do, the benefits of screening are enormous. Early treatment can improve their health and prevent severe disability or even death.
Research for a national newborn blood spot bank
Since newborn screening was introduced 30 years ago, a national network of newborn screening laboratories has evolved. Research based on the blood spot samples left over once screening has been completed has has greatly advanced our knowledge in clinical, population and basic science. More recent developments in newborn screening and in NHS information systems have created an unprecedented opportunity to enhance the research potential of a national newborn blood spot bank through data linkage.
Professor Carol Dezateux worked with a team of researchers from the Institute of Education to consider how to develop an ethical, well governed and sustainable framework for a national newborn blood spot bank. The project involved:
- consulting the public to ascertain attitudes to a national newborn blood spot bank, its potential uses and to different potential models of governance
- assessing the feasibility and acceptability of enhancing data linkage of specimens to routinely collected demographic and clinical data while preserving anonymity and preventing deductive disclosure; and
- assessing the influence of physical archiving conditions on blood spot quality.
This research was used for a proposed framework for a national newborn blood spot bank, including draft national standards for retention, storage and use of specimens.
For more information see The storage and use of newborn babies blood spot cards: a public consultation (pdf)
Page last modified on 01 nov 11 11:40