Knowles, RL; Olafsdottir, F; (2013) Initial Clinical Referral Standards after Newborn Screening for Congenital Hypothyroidism: Final Report of the UK Newborn Screening Programme Centre Expert Working Group and Systematic Evidence Review 2010-2011. Journal of Open Public Health Data , 1 (1) , Article e5. 10.5334/jophd.ae.

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Abstract

Background In April 2010, the Initial Clinical Referral Standards (ICR) for Congenital Hypothyroidism (CHT) Expert Working Group was convened as a sub-group of the Joint Standing Committee for Congenital Hypothyroidism (CHT JSC) to review and revise the UK National Screening Programme Initial Clinical Referral Standards after Newborn Screening for Congenital Hypothyroidism. The work commenced with a systematic review of the published evidence undertaken by Dr R Knowles and Ms F Olafsdottir. The Expert Working Group reviewed and recommended revisions to the existing (2005) UKNSPC standards and guidelines to support confirmatory diagnosis and initial management for babies in whom CHT is suspected. This included a review of current CHT screening policy and UK performance against national standards and European standards and guidelines. The Expert Working Group, chaired by Dr T Cheetham (Consultant Paediatric Endocrinologist), met on four occasions between July 2010 and September 2011 to review and revise the referral standards. Scope of the review To support the review process with evidence review and expert consensus where published evidence is lacking, focusing on the following topic areas: • Screening test performance and indications for referral • Diagnostic schedule for confirmatory diagnosis of CHT • Initial treatment and frequency of follow up to the point of diagnosis or definitive management • Communication flows • Communication with parents Public Consultation A public consultation was carried out in May/June 2012 and subsequent changes to the standards on the basis of the responses are included in this final version of the report. Summary and Recommendations The subgroup’s final recommendations were endorsed by the Joint Standing Committee and Blood Spot Advisory Group (BSAG) and submitted to the Fetal Maternal and Child Health Subgroup of the National Screening Committee (NSC) for approval of changes to current screening policy and standards. This final report presents the revised standards, screening protocol and diagnostic protocol developed by the Expert Working Group and finalised after public consultation, as well as the evidence basis for the revised standards and guidelines.

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