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SCGs have now all identified leads to the Newborn Screening programme
administration. The workshop for leads and others such as regional antenatal co-
ordinators is being held in London on 26th June. Representatives are attending from
all regions with the exception of the northern SCG. The draft programme has been
circulated to those attending or invited.
The focus of the workshop is for newborn screening, however, implementation and
rollout plans will need to link both newborn and antenatal services. NHS plan
commitment is for a “linked” programme.
2. 1 Newborn programme:
The plan for implementation of the programme is shown in the attached figure. The
current plan is for implementation to be complete by the end of the financial year
2004-5. The numbers in the table do not relate exactly to the laboratories providing
service and in several places have been grossed up, as it is not easily possible to
provide more detailed information at this stage. The number of babies this relates to is
listed below.
120
births
100
% Affected babies detected
80
% Babies
screened
60
%
40
20
0
March 03 Sept 03 March 04 Sept 04 March 05
March 2003-March 2005 - six monthly
Table 1: Planned rollout of screening babies for sickle cell disease
Affected births
Northern and (estimates)
Yorkshire 68,117 35,000 35,000 68,117 3
Trent 55,248 55,000 55,000 55,248 4
Eastern 61,186 61,186 2
London 104,695 123,685 123,685 123,685 202,816 73
South East 98,121 4
The laboratories have been invited to join the UK Genetic Testing Network (UKGTN)
and have returned applications for membership. Currently the Department of Health
directly fund the service provided by the National laboratory in Oxford. The
Department have given notice that this funding will need to be subsumed within
normal funding mechanisms in 2006/07. Changes for funding will be handled through
the UKGTN process that is examining future commissioning options for the
commissioning of tests that are not undertaken by the local Genetic Centre.
2
David Worthington can be reached through the National Programme by contacting
Sandra Anglin on 0207 848 6621/6634.
4. Information Technology:
A London ICT project is being progressed to enable connectivity between the three
screening laboratories (200,000 births) and links with child health, community,
maternity and other related systems. It is planned to develop this project in co-
operation with the newborn hearing screening project in order to provide the starting
point for the integrated care record as part of the development of the patient record
‘spine’. The UK Newborn Screening Programme Centre is working jointly with the
London project to incorporate the production of a bar code in conjunction with the
issue of the NHS Number for Babies. This will enable bar codes to be used on the
Guthrie Card providing a single unique identifier and to automation of data entry in
the laboratories.
5. Quality Issues:
A range of developments are planed or in process including the development of a
Newborn Pilot scheme by NEQAS (see below), developments regarding fail-safe,
quality management on the programmes, agreement of minimum criteria, standards
for counselling for couples in the antenatal programme and an approach to linking
genetic centres with the haemoglobinopathy programme in areas without significant
haemoglobinopathy services or populations. A workshop to discuss minimum
standards for the provision of counselling services is being planned.
UK NEQAS for General Haematology – details from Barbara de la Salle
Recruitment of Participants
Participation will be open to any UK laboratory undertaking neonatal haemoglobinopathy screening and
able to test dried blood spots using the methods designated by the National Haemoglobinopathy
Screening Programme (at present HPLC and IEF). These laboratories will include Haematology
departments currently performing screening and designated centralised screening laboratories, as the
3
National Plan for Neonatal Haemoglobinopathy Screening is implemented. The scheme should be open
to laboratories that are currently setting up techniques.
Frequency of distribution
Four surveys per year, with 3 specimens per survey is an acceptable schedule and will need to be
achieved to meet with the specification contained in the application to CPA. The timetable for 2003-
2004 should aim for an initial distribution in August, if possible, followed by 3 regularly spaced
distributions by March 2004. This timetable will mean that the frequency of surveys will be higher in the
first few months, which could be advantageous.
Dr JA Muir Gray and Dr Allison Streetly are in the process of writing to Regional
Directors of Public Health and Antenatal Co-ordinators about the implementation
process and the resources identified for each regional area. Funding will need to be
managed by the Specialist Commissioning process with a lead PCT and at a level that
is supported by local PCTs for pick-up following the provision of central support.
We have written to trusts responsible for implementing the programme this year
(Manchester, Liverpool, Leeds/Yorkshire and Sheffield/Trent) to request that business
cases be developed and agreed locally with the aim of releasing the relevant resources
in June or as soon as possible after this to ensure that implementation proceeds
according to plans. SHA CEs and DsPHs have been copied into these plans.
June 2003