Historical Development of the British Paediatric Surveillance Unit

1
Historical Development of the British Paediatric
Surveillance Unit

• Susan Hall Richard Lynn

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What is the BPSU?
A standardised and reproducible system for
mounting surveillance of rare childhood
disorders of public health importance
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Participating Institutions

• Royal College of Paediatrics Child Health
• Institute of Child Health (London)
• Health Protection Agency
• Scottish Centre for Infection and Environmental
  Health
• Royal College of Physicians - Ireland

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Aims

• facilitate research into uncommon childhood
  infections and disorders for the advancement of
  knowledge and
• allow paediatricians to participate in
  surveillance of uncommon disorders
• lessen the burden on reporting doctors of
• such requests arising from numerous
• different sources

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Aims (ctd)

• effect practical improvement in prevention,
• treatment and service planning
• increase awareness within the medical
• profession of the less common disorders studied
• respond rapidly to public health emergencies

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Clinical reporting the beginning

• 1962 National congenital malformation
  notification system post thalidomide disaster.
• Early 1970s lead ingestion surveillance study
  by Professor D Barltrop
• 1977 Communicable Disease Surveillance Centre
  (CDSC) set up by PHLS Dr Spence Galbraith first
  director. And
• Drs Bill Marshall Tony Jackson suggest a
  clinical reporting system for uncommon events.
  Professor June Lloyd suggests paediatricians
  contribute to the reporting of infectious disease
  to CDSC

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In the Beginning (ctd)

• 1976 1978 National Childhood Encephalopathy
  Study (NCES) Miller DL Ross EM, Alderslade R,
  Bellman MH, Rawson NS.
• Aims to investigate the epidemiology of
  encephalopathy in childhood and identify any
  meaningful association with the DTP vaccine.
• Methods Consultants in paediatrics, infectious
  disease and neurosurgery invited to report VIA A
  MONTHLY CARD every case of encephalopathy in
  children aged 2 months to 3 years.
• Findings - Most causes of neurological illness
  in early childhood are attributed to causes other
  than immunisation. Permanent damage as a result
  of pertussis immunisation is very rare.
• Published HMSO Whooping Cough.Report from the
  Committee on Safety of Medicines and the Joint
  Committee on Vaccination and Immunisation 1982

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Professor Euan Ross
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National Childhood Encephalopathy Study
National Childhood Encephalopathy
Study NOTIFICATION CARD Hospital Consultant Ward
Patients name Patients address Date of
Birth Date admitted Diagnosis on
admission G.PS Name G.Ps Address National
Childhood Encephalopathy Study I have admitted
no case this month which meets the criteria for
notification Since notifying you of xxxxxxx I
have admitted no further cases which meet the
criteria for notification I wish to notify you of
a case. (See separate Notification Card) Please
tick appropriate box

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Next Steps (ctd)

• 1979-1980 BAPP - CDSC surveillance of NNEC
• 1981Dr Martin Bellman persuades CDSC to set up
  passive surveillance of Reyes syndrome in
  collaboration with BPA Dr Susan Hall assigned
• 1982 Dr David Harvey supports CDSCs proposal
  to add HUS, Kawasaki Disease, Haemorrhagic Shock
  Encephalopathy Syndrome to the report form
• 1984 BPA Executive supports proposal by Drs
  Galbraith and Harvey to set up joint BPA/CDSC
  Surveillance Unit using active reporting system

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CDSC Involvement
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Next Steps (ctd)

• 1984 BPA Winter Newsletter announces formation
  of BPSU and Steering Group Sir Cyril Clarke
  (chair), Sir Peter Tizard, Professor R Boyd, Drs
  JD Baum, Tim Chambers, NS Galbraith, E Ross, J
  Davies, J Smith, Dan Reid
• 1985 appointment of medical coordinator Dr
  Susan Hall and administrator Myer Glickman and
• recruitment of Professor Catherine Peckham to
  Steering Committee formation of Scientific
  Advisory Committee (chaired by Sir Peter Tizard).

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Sir Cyril, Sir Peter, David, Sue Catherine
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Next Steps (ctd)

• 1985 September
• First BPSU Scientific Advisory Committee meeting

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Scientific Advisory Committee circa 1986
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Next Steps (ctd)

• October 1985 March 1986 Pilot mailing of
  report cards.

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Pilot Results

• Response 66/69 (96)
• Supportive of BPSU 65/66 (98)
• Reply Paid Response? 62 No
• Minor modifications to card/booklet
• Questionnaire to be short and simple
• Need for fair protocol review procedure

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Next Steps (ctd)

• 1986 - February
• The birth of the BPSU was announced in the Times

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(No Transcript)
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The Final Step

• 1986 July Surveillance began
• eight conditions on the card

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Actual early card
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X-linked anhydrotic ectodermal dysplasia
Haemorrhagic Shock Encephalopathy Syndrome
Haemolytic Uraemic Syndrome
Neonatal Herpes
Kawasaki Disease
Reyes Syndrome
SSPE
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As time goes on

• 1986-87 RCPI representative Dr Ralph Counahan
  joins the Steering Committee and
• Steering committee and SAC merge to form BPSU
  Executive Committee

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BPSU Executive circa 1991
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As time goes on (ctd)

• 1990 Richard Lynn joins as
• Scientific Coordinator

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BPSU Executive circa 1999
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As time goes on (ctd)

• Numbers of studies increase

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BPSU Orange Card
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As time goes on (ctd)

• 1986-2006 methodology constantly under
  review and refinement

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BPSU Methodology
Alternate Source of Data
Researchers
Questionnaire
BPSU OFFICE
BPSU Orange Card
Paediatricians
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As time goes on (ctd)

• 1994 BPSU joins newly formed RCPCH Research
  Division
• 1997 BPSU Website launched
• 1998 International Network of Paediatric
  Surveillance Units formed

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INoPSU Current members
Latvia
Germany
Netherlands
UK
Wales
Switzerland
RoI
Greece/Cyprus
Portugal
Canada
Papua New Guinea
Trinidad Tobago
Malaysia
Australia
New Zealand
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Grants Financial Support
An Anonymous Trust (through the RCP) Institute of
Child Health (London) Children Nationwide
(Wellchild) Department of Health Health
Protection Agency Scottish Centre for Infection
and Environmental Health RCPCH,
RCPI Investigators Fees and their funders John
Wiley and Son Duphar Laboratories Allen and
Hanburys Sanofi Labaz Schering Plough
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Children Nationwide circa 1988
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Achievements

• Participation - 90
• Publications/presentations gt300
• 63 studies completed
• 20,000 cases reported
• Educated and informed
• Responded to emergencies
• Imitation

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Publications
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Completed Studies 1986-2005
X-linked anhydrotic ectodermal dysplasia Lowe
syndrome Insulin dependent diabetes in under
fifteens Haemorrhagic Shock Encephalopathy
Syndrome HIV/AIDS Haemolytic uraemic syndrome
Reye's syndrome Kawasaki disease Drowning and
near drowning Higher Order Births Congenital
toxoplasmosis Rett Syndrome Acute Rheumatic
Fever Galactosaemia Neonatal Herpes Measles,
mumps, rubella-meningococcal meningitis
Chemistry Set Poisoning Long term parenteral
nutrition Insulin Dependent Diabetes in under
fives Congenital Dislocation of Hip Androgen
Insensitivity Syndrome Juvenile dermatomyositis
Subacute Sclerosing Panencephalitis Acute
Flaccid Paralysis Haemophagocytic
Lymphohistiocytosis Non-accidental Poisoning /
Munchausen Syndrome by Proxy Neonatal
Nectrotising Enterocolitis Biliary Atresia
Transient and permanent neonatal diabetes MCADD
Adverse neonatal outcomes of delivery or labour
in water Congenital syphilis Congenital
cataracts Pyridoxine dependent seizures
Neonatal meningitis Cerebral oedema and death
following diabetic ketoacidosis Hepatitis C
virus infection Congenital brachial palsy
Subdural haematoma and effusion Inflammatory
bowel disease in under 20 year olds Fatal/severe
allergic reactions to food ingestion Invasive
Haemophilus influenzae infection Severe Visual
Impairment/Blindness Group B Streptococcal
Disease Subacute Sclerosing Panencephalitis
Encephalitis in early childhood (2 months - 3
years) Cerebrovascular disease, stroke and like
illness Vitamin K deficiency bleeding
Congenital cytomegalovirus Thrombosis in
childhood Internal abdominal injury due to child
abuse Suspected fatal adverse reactions
Varicella Fungal infections Childhood
tuberculosis Severe hyperbilirubinaemia
Langerhans Cell Histiocytosis thyrotoxicosis
Non-type 1 Diabetes
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Kawasaki Reye
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Red top exclusive!
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BPSU Executive circa 2006
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The Importance of Surveillance
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BPSU - Final Conclusions

• A multi-tasking surveillance tool
• An impressive set of achievements
• Future challenges include improving
  ascertainment increasing our public profile and
  addressing the issues of ethics and consent

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Quotes
British and Irish paediatricians can feel justly
proud of themselves as pioneers and key enactors
of this unique reporting system Sir Cyril
Clarke Chairman of the BPSU Steering
Committee It is a matter of great pride for this
country that the innovative and scrupulous
epidemiology of the BPSU has been emulated by
several other countries in Europe and beyond Sir
Liam Donaldson Chief Medical Officer The BPSU
has had a major impact in helping children with
rare disorders Francine Bates Chief Executive,
Contact A Family
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Thank You

• The work the BPSU has facilitated over the past
  20 years could not have been undertaken without
  the enthusiastic support of the members of the
  Royal College of Paediatrics and Child Health.
• On behalf of our investigators we would like to
  thank you all.