On 16 June, the UK National Screening Committee (UK NSC) and NHS England hosted an online seminar looking at the impacts of newborn screening for severe combined immunodeficiency (SCID). More than 200 stakeholders joined us, including people from NHS trusts and health boards, genomics and screening specialists, academic institutions, patient and charity groups, the commercial sector and international health organisations.
Dr Jane Chudleigh, Senior Lecturer at King's College London, delivered the presentation. She shared findings from a mixed methods evaluation looking at how screening for SCID, and a positive screening result, affects parents and carers and impacts on clinical services.
It was particularly powerful to hear about the experiences of parents and carers - both from those who had received a false positive result and those whose children have been diagnosed with SCID. A lively question-and-answer session followed the presentation.
The seminar was hosted by Professor Anne Mackie, UK NSC Director of Programmes, expertly supported during the Q&A session by Dr David Elliman, consultant at Great Ormond Street Hospital and Clinical Lead for the Newborn Blood Spot Screening Programme, and Liz Robinson, Senior Newborn Pathways Development Manager at NHS England.
Presentation slides
A PDF version of the seminar presentation is available via the link below:
Evaluating the impacts of newborn screening for SCID by Dr Jane Chudleigh.
UK NSC seminar topics
You can see the list of our previous seminars, and details of any upcoming seminars, on the UK NSC seminars webpage.
If you have an idea for a future seminar topic, please email us at uknsc@dhsc.gov.uk.
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