Date: January 14, 2010 (Thursday)
Time: 13:00 – 14:30 (sandwich lunch from 13:00 – 13:15; seminar begins at 13:15)
Venue: Mrs Chen Yang Foo Oi Telemedicine Centre, 2/F, Room A2-08, William M.W. Mong Block, Faculty of Medicine Building, 21 Sassoon Road, Pokfulam, Hong Kong

Abstract:

Paradoxically, rare diseases are an important cause of childhood morbidity and mortality. Individually uncommon, together they number in the thousands and many have long term sequelae and public health implications. Their rarity makes research into their causes, treatment and prevention difficult, particularly in ascertaining enough cases for meaningful study results.

To address this problem in the UK and Ireland, the British Paediatric Surveillance Unit (BPSU) was set up jointly by the Royal College of Paediatrics and Child Health, and a number of other bodies, in July 1986. The BPSU is a nationwide clinical reporting scheme using active case ascertainment to facilitate monitoring of and research into uncommon childhood diseases, in order to generate knowledge, and facilitate prevention, treatment and service planning. It increases clinicians' awareness of these disorders and can respond rapidly to a public health emergency.

In its first 22 years, 71 studies were completed. The UK Department of Health funds the Unit because some studies, e.g. HIV Infection, and Progressive Intellectual and Neurological Deterioration, were undertaken at its request. Furthermore, the success of the BPSU has led to the formation of similar units in 13 other countries throughout the world. Examples of completed and ongoing projects as well as details of the methodology will be presented.

Bio-sketch:

Professor Susan Marianne Hall is an Honorary Professor in the School of Child and Adolescent Health at Red Cross Hospital, University of Cape Town. She is also an Honorary Lecturer in the Department of Paediatrics at Sheffield Children's Hospital, Western Bank, Sheffield.

Summary of Professor Susan Marianne Hall's career achievements:

• Establishment of a family planning and women's health service based at (Chris Hani) Baragwanath hospital, 1973-6. This service was run by a team of 12 nurses who she trained to recognise early pregnancy, pelvic inflammatory disease, sexually transmitted diseases and general medical conditions. In addition to gaining expertise in family planning skills and insertion of intrauterine contraceptive devices, these nurses also provided advice on subfertility and referred when appropriate. This team of nurses continued to work together for many years after Dr Hall left South Africa.
  
  
• Establishment of training courses in Family Planning for doctors in collaboration with the (then) Department of Medical Education at the University of the Witwatersrand.
  
  
• In collaboration with colleagues from the Public Health Laboratory Service and from the (then) British Paediatric Association she helped set up and run the British Paediatric Surveillance Unit, which has now been copied in at least 12 other countries. She was Medical Adviser to the BPSU 1985-1993.
  
  
• She conducted a series of studies on Reye's syndrome which helped persuade the Committee On Safety of Medicines to require warning labels on all children's preparations of aspirin in 1986-and further study provided the evidence to raise the age limit to 16, in 2003. This disease has virtually disappeared from the UK since these warnings.
  
  
• She contributed to studies which persuaded the Department of Health not to introduce a screening programme for toxoplasmosis, which was being demanded by some parents, as her work showed that this would have been ineffective.
  
  
• She conducted studies on listeriosis, which identified important risk factors in food, leading to health education information and a marked decline in cases.
  
  
• She studied Kawasaki disease epidemiology in the UK and demonstrated weaknesses in its management.
  
  
• She showed that there was serious under-diagnosis of inherited metabolic disorders which masquerade as Reye's syndrome; set up a workshop to examine the problem; wrote up and e-published the Proceedings and facilitated funding for development by the University of Nottingham, of a formal evidence-based guideline for management of the child with reduced consciousness. The Guideline was completed and disseminated throughout the UK in 2006.
  
  
• She has done extensive work for several voluntary organizations, including a 20 year association with the National Reye's Syndrome Foundation of the UK.
  
  
• She has published extensively, including her work on Reye's syndrome and other uncommon paediatric infections and infection related disorders and on principles of surveillance of uncommon disorders of public health importance.