British Paediatric Surveillance Unit
The BPSU was established in 1986. It is a joint initiative of the Royal College of Paediatrics and Child Health (RCPCH), Public Health England (PHE) and the UCL GOS Institute of Child Health (ICH). The BPSU has enabled paediatricians to participate in the national epidemiological surveillance of rare childhood conditions in the UK and Republic of Ireland. Through the Units national data collection doctors and researchers can map the incidence of particular disorders, evaluate care and identify trends. With over 3800 participating paediatricians the Unit regularly achieves a response rate of over 90%.
Since its inception the BPSU has initiated over 100 studies; collected information on over 25,000 cases; published and presented over 300 papers; held several scientific symposia; developed links with parent support groups; and encouraged the development of similar surveillance units within the UK and abroad.
Richard Lynn MBPsS, MSc (Scientific Coordinator)
British Paediatric Surveillance Unit
Royal College of Paediatrics and Child Health
5-11 Theobalds Road, London WC1X 8SH
Tel: 020 7092 6173
The APSU commenced surveillance in May 1993. There are approximately 1390 paediatricians and child health clinicians reporting to the APSU.
APSU has been evaluated twice (in 1999 and 2007) according to the Centres for Disease Control (CDC) criteria. In both evaluations APSU was found to fulfil its objectives and met key CDC criteria. Both evaluations also included direct feedback from paediatricians who participate in monthly surveillance, who perceived the APSU to be educationally useful particularly in the provision of diagnostic criteria for the rare conditions studied. It was perceived to be a simple and flexible scheme and acceptable in terms of workload.
APSU collaborates closely with the New Zealand Paediatric Surveillance Unit, sharing study protocols where possible and appropriate, as well as having representation on each other's scientific review panels.
Professor Elizabeth Elliott (Director)
Australian Paediatric Surveillance Unit (APSU)
Level 2, Research Building
The Children's Hospital at Westmead
Locked Bag 4001
Westmead NSW 2145
Canadian Paediatric Surveillance Program
The Canadian Paediatric Surveillance Program (CPSP) was established in 1996 and is a joint project of the Public Health Agency of Canada and the Canadian Paediatric Society. It contributes to the improvement of the health of children and youth in Canada by national surveillance and research into childhood disorders that are high in disability, morbidity and economic costs to society, despite their low frequency.
The CPSP gathers data from over 2500 paediatricians and paediatric sub-specialists each month to monitor rare diseases and conditions in Canadian children. Other participants, such as coroners, paediatric surgeons and adult endocrinologists are enrolled in the program when research studies indicate their participation is required for full ascertainment. These physicians cover a paediatric population of over 7-million Canadian children and youth. In 2012, the CPSP introduced online reporting.
The CPSP has introduced two novel ways to promote studies and provide educational program-related feedback to voluntary participants:
- CPSP Highlight
Published in Paediatrics & Child Health, the Canadian Paediatric Society Journal since 2001, these highlights include short clinical vignettes from studies or one-time surveys, with brief but important learning points.
- Adverse Drug Reactions (ADR) - Tip of the Month
Sent to participants on a monthly basis, this educational tool on adverse drug reaction topics aims to build support and awareness of the ADR study, facilitating case ascertainment, and impacting new information relating to the study or broader ADR surveillance topics
Melanie Laffin Thibodeau
Canadian Paediatric Society
2305 St. Laurent Blvd,
Ottawa, ON K1G 4J8
Tel: 613-526-9397, ext. 239
Encouraged by the success of the BPSU, a German adaptation of the surveillance scheme called the ESPED was initiated in July 1992 to cover the country which has one of the largest child populations of any of the units (around 12-million). The surveillance system differs from the original British methodology in that cards are sent to paediatric department heads to complete. The response rates for the 460 groups of clinicians have risen significantly from 75% in 1992 to 95% in 2011, with the follow-up rate of completion of questionnaires in the range of 59% to 100%.
Professor Ruediger von Kries
Institute for Social Paediatrics and Adolescent Medicine
Ludwig-Maximilians University Munich, Germany
Tel. +49 (0)89 552734 140
Greece & Cyprus Paediatric Surveillance Unit
Members of our PSU are the Cyprus Paediatric Association, the Ministry of Health the First Paediatric Clinic of University of Athens, the Hellenic Society of Paediatric Infectoius Diseases, the Hellenic Paediatric Society and the University of Thessalia. In order to benefit from the experience of the BPSU in the United Kingdom, two visits were organized: The 1st in July 2001 to London, and the 2nd in April 2002 to York for the first Conference of the International Paediatric Surveillance Units (INoPSU) during which CGPSU was accepted as an associate member. The delegates to both events were Drs. Maria Theodoridou and Christos Hadjichristodoulou. The methodology and experience of the BPSU were presented to the members of our PSU.
The Executive Committee worked on implementing a structure that would support the reporting and the collection of the detailed questioner. We found that the reporting system of the collected data with the green card was not practical in Cyprus. Our system was based on the creation of working groups in every town. These groups were responsible for the collection of the epidemiological data by completing and forward the appropriate forms to the Coordinator of the Unit.
Dr Christos Hadjichristodoulou
Associate Professor of Epidemiology
Department of Hygiene and Epidemiology
University of Thessaly
4 Lapithon Street
41221, Larissa Greece
Tel: +30 (2410) -565259
Irish Paediatric Surveillance Unit
Set up in 1996 by the Faculty of Paediatrics of the Royal College of Physicians (Ireland) in cooperation with the Ulster Paediatric Society. The IPSU compliments the work of the British Paediatric Surveillance Unit by surveying for more common disease in the Ireland, North and South. Covering a child population of around 1.3 million, surveillance is achieved through a monthly-prepaid postcard circulated to around 150 members of the Irish Paediatric Society. The response rate is currently around 80%. The IPSU was accepted as a full member of the INoPSU in 2002.
Dr Robert Cunney
Irish Paediatric Society
Children's University Hospital
Temple Street, Dublin 1
Republic of Ireland
Tel: 003531 8784200
New Zealand Paediatric Surveillance Unit
The NZPSU is co-directed by Dr Ben Wheeler and Dr Mavis Duncanson. From it's inception in 1997 the NZPSU has received financial support from the New Zealand Ministry of Health to provide active surveillance of acute flaccid paralysis as part of WHO's polio eradication initiative. Each month 245 paediatricicians are sent a surveillance card covering a child population of 0.86 million. The response rate remains high at 91%. The unit is working closely with the APSU with protocols and questionnaires developed for some APSU studies also being used for some NZPSU studies. This process will allow data to be collected simultaneously in two geographically distinct populations.
Dr Ben Wheeler (Co-Director)
Dr Mavis Duncanson (Co-Director)
Department of Paediatrics and Child Health
Dunedin School of Medicine
University of Otago, PO Box 913
Dunedin, New Zealand
Tel: 0064 3 474 7825
Netherlands Paediatric Surveillance Unit
Around 780 paediatricians in general and academic hospitals receive the monthly card. The eight university hospitals have each nominated specific personnel to respond for separate disorders and to be responsible for reporting all cases in that hospital. The overall response rate for the paediatricians receiving the card has risen from 83% in 1992 to 92% in 2004. It fell gradually to 86% in 2008. The follow-up rate is also high at over 90%. In 2008 we had 1380 reported cases and 4 peer reviewed publications as a result of studies under surveillance. The importance of full case ascertainment has been realised and where possible alternative complementary data sources have been recruited for particular disorders. For example, surveillance of diabetes was strengthened by the inclusion of the Dutch Diabetic Association, while surveillance of invasive haemophilus influenzae infection was improved by using reports from the Netherlands Reference Laboratory for bacterial meningitis and neural tube defects ascertainment was realised with the national neonatal registry and the parents association.
Henrike Klein Ikkink (Interim-Coordinator)
Dutch Society for Pediatrics
PO Box 20059
3502 LB Utrecht
Tel: 088 282 3306
Portuguese Paediatric Surveillance Unit
The Portuguese Paediatric Surveillance Unit (PPSU) is a scientific branch of the Portuguese Paediatric Society (SPP), with no state institutional links. It was established in June 2000 and began active surveillance in April 2001. The PPSU includes all registered paediatricians, paediatric surgeons, paediatric neurologists and paediatric cardiologists, as well as the residents of these specialties for a total of over 1,500 participants. Notification is individual, not institutional. Both postal and electronic notification is available for the return of both the postal card and the case inquiry.
During 2003, the return rate of notifying cards oscillated between 20% and 25%, amounting to circa 300 cards returned monthly. Of the 3,340 cards returned in 2003, 145 (4.34%) participants notified cases. More than 100 cards are electronically returned each month. The confirmation of notified cases is not yet closed as circa 50% of the case inquiries have not yet been returned.
So far, the PPSU has been able to confirm the national dimension of the surveillance system. Data confirm the utility of including non-hospital based physicians on the mailing list, particularly for some conditions under surveillance such as Diabetes. The large mailing list includes every paediatrician (or related specialist) in the country, both active and retired, as well as residents. The PPSU knows that this decision affects negatively the return rates, but it has elements that suggest that reporting cases of the diseases under surveillance is not negatively affected. This fact supports the decision of keeping every member of the Portuguese Paediatric Society on the mailing list, despite low return rates, at least for some time.
Dr Daniel Virella (Coordinator)
Portuguese Paediatric Society
R. Amilcar Cabral, 15-r/c I 1750-018,
Tel: 351 21 757 4680
Swiss Paediatric Surveillance Unit
Report cards are circulated to a responsible paediatrician (n=33) at each of the 33 paediatric teaching clinics representing about 250 hospital or clinic-based paediatricians (i.e. not to those delivering primary care) and covering a total child population of 1.3 million children. The response rate for the initial cards is 100%, and 96-98% for the complementary questionnaires.
Mirjam Mäusezahl-Feuz MSc MPH (Coordinator)
Head Epidemiological Monitoring and Assessment Section
Division of Communicable Diseases
Federal Office of Public Health FOPH
Office: Schwarzenburgstrasse 157
Welsh Paediatric Surveillance Unit
The WPSU was set up in 1994 as a joint venture between the University of Wales Departments of Child health (Professor J Sibert) and Public Health Medicine (Professor S Palmer). The management of the system was reorganised in 1996 in conjunction with the Welsh Paediatric Society (Dr J Morgan, co-ordinator), which supports the system. Funding has also been obtained from the Welsh Office for Research and Development and latterly Public Health Wales, within the National Assembly for Wales.
The Welsh system looks at conditions in children in Wales, which are considered too common for a UK study or too uncommon for a local hospital to perform. The WPSU uses similar methodology to the orange card system of the British Paediatric Surveillance Unit (BPSU) with whom we have a close relationship. We endeavour to discuss all our new projects with the BPSU to ensure that there is no overlap: a number of proposals have either been paused or suspended whilst the BPSU studies were conducted.
Monthly (green) cards listing the conditions currently being studied are distributed mostly by email to consultant and community paediatricians and senior doctors working in Wales (and some border hospitals), covering a childhood (0-15 years) population of around 560,000. A small box is ticked if one of the conditions has been encountered in the preceding month. Where a reporting doctor has encountered one or more of our study conditions the number of patients is entered into the appropriate box, and the patients’ details are recorded separately as a reminder for the doctor. If no cases are encountered a simple confirmation that no cases have been seen in the preceding month is all that is required. The email (or green) card is then returned to the Surveillance Office within the Department of Child Health, Cardiff and Vale University Health Board at the Noah’s Ark Children’s Hospital for Wales in Cardiff.
Mailings can be extended to include other consultants in Wales, particularly if older children may be affected. This has been very successful in studies involving Acute and Chronic Renal failure and Inflammatory Bowel Disease. Paediatricians along the border of England have also been very helpful where some Welsh children have been treated outside Wales. Latterly general surgeons and neurologists throughout Wales have also been very helpful with the studies on gall stones in children and juvenile myoclonic epilepsy.
It is important that the system encourages and supports all doctors involved in the projects, feeding back as much information to individual doctors as possible and thereby increasing the awareness of the studies. The system is there for everyone to use and we hope that paediatricians in training will also see this system as an opportunity to help with research and audit projects. They may initiate studies under supervision.
The unit looks to provide the Welsh National Assembly with data that can assist in the planning of Health Care for Children in Wales, to act as a resource for the determination of the epidemiology of diseases in childhood and to assist audit and research.
Heather O'Connell - Administrator WPSU
Dr Johann te Water Naudé - Director
Department of Child Health,
University Hospital of Wales
Cardiff, United Kingdom
Tel: 029 2074 3946