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Data paper
Data: ‘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
- Clinical Research Fellow/Honorary Consultant, MRC Centre of Epidemiology for Child Health, UCL Institute of Child Health, London, United Kingdom
- Research Assistant (Summer Studentship), MRC Centre of Epidemiology for Child Health, UCL Institute of Child Health, London, United Kingdom
Abstract
The multidisciplinary Expert Working Group was tasked with revising the existing standards of the UK NHS National Screening Programme for diagnosis and management of babies in whom congenital hypothyroidism (CHT) is suspected after newborn bloodspot screening. This report includes a systematic evidence review and account of the proceedings of the working group in key areas: screening test performance, referral pathways, diagnostic investigations, treatment and communication with parents. After public consultation, the recommendations were adopted as policy. This final report provides an evidence base for reviewing newborn screening for CHT in other populations and outlines a transparent consensus-based process for agreeing changes to screening standards and policy.
Funding Statement
The evidence review and working group were supported by funding from the UK NHS Newborn Screening Programme Centre.
(1) Overview
Context
Spatial coverage
United Kingdom
Temporal coverage
2010-2012
Species
homo sapiens
(2) Methods
Steps
Systematic review: The systematic literature review included 115 published papers relevant to newborn screening for congenital hypothyroidism. Evidence summaries relating to each topic area were developed.
Expert Working Group: Members of the working group provided a consensus interpretation of the evidence relating to each standard. Recommendations for revising each standard were based on expert interpretation of the evidence and, if required, external experts were invited to present additional evidence.
Public consultation: A public consultation on the draft recommendations and revised standards was held in May/June 2012.
Published standards: A final revised set of standards was approved as screening policy and published in February 2013.
Sampling Strategy
Search strategies included the databases Embase, Medline, PsychInfo and Cochrane Trials Register, for the period up to June 2010, without imposing any language restrictions. Reference lists of retrieved papers were reviewed to identify additional papers.
Quality Control
Working Group recommendations were submitted to the UK National Screening Committee. A public consultation was held in May 2012. A publicly available consultation report is available from the UK Newborn Screening Programme.[1]
Constraints
N/A
Privacy
Working group members, and any additional experts consulted, are named and their affiliations provided in the appendix to the report.
(3) Dataset Description
Object Name
FINAL_REPORT_ICR_CHT_REVIEW_Jan 2013
Data Type
Grey literature
Format Names and Versions
PDF, ODT
Creation Dates
1st January 2013
Dataset Creators
Rachel L Knowles, Freyja Olafsdottir
Repository Location
Publication Date
January 2013
language
English
License
CC0
(4) Reuse potential
The systematic evidence review and report of the proceedings of the working group provides an evidence base for reviewing standards for clinical referral and investigation after newborn screening for CHT in the UK, but would also be of relevance to other populations undertaking newborn bloodspot screening. It describes a transparent process for agreeing changes to screening standards and policy that is based on achieving cross-disciplinary understanding and consensus, and actively includes parents. The report is available to users and is intended to support the development of communication and a transparent methodology for achieving consensus and collaboration around newborn screening policy.
Acknowledgements
The expert working group included representatives of British Society for Endocrinology and Diabetes (BSPED), UK Newborn Screening Laboratory Network (UKNSLN) and UK Newborn Screening Programme Centre (UKNSPC). Expert working group members were: Dr Tim Cheetham (Chair), Ms Jacqui Adkins, Ms Lynn Booth, Professor John Gregory, Dr Jeremy Kirk, Dr Catherine Peters, Dr Melanie Downing, Dr Kate Hall, Dr Carol Evans, Ms Shirley Langham, Dr Laurence Abernethy, Mr Jez Jones, Dr Rachel Knowles, Ms Cathy Coppinger, Ms Radhika Rajani and Ms Brielle Woods. Additional contributions were sought from Ms Freyja Olafsdottir and Dr Tony Sirimanna. All members of the working group contributed significantly to the expert opinion statements, interpretation of the evidence, development of the standards and editing of the final report.
References
- UK Newborn Screening Programme Centre. Initial clinical referral (ICR) for congenital hypothyroidism (CHT) revised standards and guidelines consultation: 14th May 2012 to 15th June 2012, Available at: http://newbornbloodspot.screening.nhs.uk/icrchtconsultation [Last accessed 10 February 2013].
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How to cite: Knowles, R.L. and Olafsdottir, F 2013. Data: ‘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’.. Open Health Data 1(1):e5, DOI: http://dx.doi.org/10.5334/jophd.ae |
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This is an Open Access article distributed under the terms of the Creative Commons Attribution License
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This article has been peer reviewed (journal peer review policy). |
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Published on 9 July 2013. |
ISSN: 2054-7102 | Published by Ubiquity Press |
This work is licensed under a Creative Commons License.