(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

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.