“Extended newborn screening - anticipating the future”.
A joint meeting of the Section of Paediatrics and Child Health and the Forum on Maternity and the Newborn of the Royal Society of Medicine, Tuesday 22nd February 2005.

Report of this meeting.

Morning session. Chair: John Dodge, Professor of Child Health, University of Wales, Swansea. President of the Section of Paediatrics and Child Health.

9.00 - 9.45 a.m. Registration

9.45 - 10.15 a.m. “Existing programmes; lessons learned, errors made”.
Professor James Leonard, Great Ormond Street Hospital for Children,London.

10.15 - 10.25 a.m. Discussion

10.25 - 10.50 a.m. “Screening for cystic fibrosis - the Brittany experience”.
Professor Claude Ferec, Laboratory for Molecular Genetics, Brest, France.

10.50 - 11.00 a.m. Discussion

11.00 - 11.30 a.m. Coffee

11.30 -11.55 a.m. “The power of new technologies to extend the scope of screening”.
Professor Peter Clayton, Great Ormond Street Hospital for Children, London.

11.55 - 12.05 p.m. Discussion

12.05 - 12.30 p.m. “Extended newborn screening - which diseases?”
Professor Rodney Pollitt, The Neonatal Screening Laboratory at the Children's Hospital, Sheffield.

12.30 - 1.00 p.m. Discussion, with all four speakers.

1.00 - 2.00 p.m. Lunch.

Afternoon session. Chair: Dr. Patricia Livsey, Head of the Child Health Department, City University, London.

2.00 -2.10 p.m. “What is it like to be told that your 'healthy' baby has a disease?” from Wendy Cheale, a parent.

2.10 - 2.20 p.m. “What is it like to learn that your baby's disease has been missed for lack of screening?” from Tracey Randle, a parent.

2.20 - 2.35 p.m. "The impact of screening on families - a health visiting perspective".
Helen Johnstone, Public Health Practitioner, Healthy Living Centre, Carlisle.

2.35 - 3.00 p.m. “Newborn screening - working with parents”.
Dr. Sandy Oliver, Parent Support Research, UK Newborn Screening Programme Centre.

3.00 - 3.30 p.m. Understanding the psychological impact of neonatal screening on parents.
Professor Theresa Marteau, Department of Psychology, Guy's,King's and St. Thomas' School of Medicine.

3.30 - 3.45 p.m. “The practical implications of neonatal screening - the flow of information”.
Dr. Ying Foo, Great Ormond Street Hospital for Children, London.

3.45 - 4.30 p.m. Discussion chaired by Dr. Ying Foo and Dr. Patricia Livsey.

4.30 p.m. Meeting ends with tea.