1. bowend@gosh.nhs.uk 020 7405 9200 xt5064 smithk4 @gosh.nhs.uk 020 7405 9200 xt5629 Neo-natal screening in North London David Bowen Ken Smith Great Ormond Street Hospital for Children NHS Trust

2. bowend@gosh.nhs.uk 020 7405 9200 xt5064 smithk4 @gosh.nhs.uk 020 7405 9200 xt5629 The GOSH neo-natal screening service 110,000 screening tests a year Tests: PKU, Congenital Hypothyroidism, Sickle Cell, MCADD, Cystic Fibrosis (from April) Covers N London, Essex, Beds and Herts Some linked, others not

3. bowend@gosh.nhs.uk 020 7405 9200 xt5064 smithk4 @gosh.nhs.uk 020 7405 9200 xt5629 Strategic Background UK Newborn Screening Programme National Programme for IT CRS – Children’s Services in P2R1 …and Screening in P2R2

4. bowend@gosh.nhs.uk 020 7405 9200 xt5064 smithk4 @gosh.nhs.uk 020 7405 9200 xt5629 An unexpected change of circumstances Deadline – 31 st March 2005: Replace screening system in lab Rebuild links

5. bowend@gosh.nhs.uk 020 7405 9200 xt5064 smithk4 @gosh.nhs.uk 020 7405 9200 xt5629 Tactics Dedicated v. Mix and match Screening = Lab + workflow functionality Participants: Managers and Testers Interface between them based on open standards

6. bowend@gosh.nhs.uk 020 7405 9200 xt5064 smithk4 @gosh.nhs.uk 020 7405 9200 xt5629 Way forward New child health networks receive data from health organisations (CCA, London LSP, to develop) New GOSH repository to hold data (integrated into GOSH IT infrastructure) Child health network send birth notifications to GOSH GOSH receive birth notifications and demographics GOSH will send, to child health networks, notifications of receipt of cards GOSH will send results to child health networks. All messages in HL7 format, some in v2.4, some in v3.0

7. bowend@gosh.nhs.uk 020 7405 9200 xt5064 smithk4 @gosh.nhs.uk 020 7405 9200 xt5629 Way Forward

8. bowend@gosh.nhs.uk 020 7405 9200 xt5064 smithk4 @gosh.nhs.uk 020 7405 9200 xt5629 Benefits of our approach We can integrate with “anyone” Cost effective Application redundancy management Exploit the flexibility of our lab system Same applies to CH systems