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International
network
The international network of paediatric surveillance units (INoPSU) was established in 1998, with 10 founding units using a similar methodology (Table 1). Its primary aim is to enhance communication and collaboration between units worldwide.
- The network comprises 13 units worldwide
- The structure of INoPSU is shown in Figure 1 . The secretariat includes members from Australia, Britain, Canada and the Netherlands Table 2
To encourage and facilitate:
- Communication between existing surveillance units
- Development of new units
- Information sharing about the surveillance process
- Simultaneous or sequential data collection from two or more countries
- National comparison of incidence of rare childhood conditions
- Dissemination of information to national and international health authorities
- Increased awareness, early diagnosis and management of rare conditions
- Identification of emerging disorders
- Establishment of international cohorts to support future research
- INoPSU activities were highlighted in Key Issues in Child Health Surveillance - a joint symposium of the Royal College of Paediatrics and Child Health and the Royal College of Physicians of Edinburgh, November 1999. This included: presentations by the BPSU on past achievements and future challenges, new variant CJD, cerebral oedema and death in diabetic ketoacidosis and new facts about haemolytic uraemic syndrome. APSU presented a paper on the Development of INoPSU and Evaluation of a Paediatric Surveillance Unit.
- The first formal meeting of INoPSU, sponsored by Health Canada, was held in conjunction with Beyond 2000. Healthy Tomorrows for Children and Youth, a joint meeting of the Canadian Paediatric Society, Canadian Institute of Child Health and Canadian Academy of Child Psychiatry, in Ottawa. This included:
1) A business meeting attended by twelve representatives from eight countries: Australia, Canada, England and Eire, Germany, Papua New Guinea, Malaysia, New Zealand and Wales. Progress reports were received from each unit. The increasingly important issues of privacy and confidentiality of health data were discussed and INoPSU proposed a set of ethical guidelines for surveillance programs.
2) A symposium on Methodological issues in paediatric surveillance included presentations on Methodology of surveillance, Application of surveillance (APSU), Practicalities and difficulties, Mother-child transmission of HIV, Perinatal surveillance, IMPACT and Ethics.
3) A keynote address on Surveillance in Children: Is there strength in numbers? by Dr Peter Rosenbaum
- A Draft Application was prepared by INoPSU for membership of the International Paediatric Association (IPA)
- Dr Victor Marchessault to present case on behalf of INOPSU to the IPA Council at the IAP Scientific Meeting in Beijing in September 2001
- Welsh Paediatric Surveillance Unit elected as INoPSU member
- British Ophthalmic Surveillance Unit elected as the first Associate member of INoPSU
- APSU Director, Elizabeth Elliott elected as Convenor of INoPSU
- Establishment of website at www.INOPSU.org with details of all units, current and previous studies
- Regular INOPSU newsletter initiated
- Paper published by INoPSU secretariat Rare disease surveillance: an international perspective in the Canadian journal Paediatrics and Child Health 2001;6:251-260.
- Invitation for INOPSU to meet at the RCPCH Annual Scientific Meeting of the Royal College of Paediatrics and Child Health in York, April 14th- 15th, 2002. Two delegates from each unit invited to attend business meeting. Also Invited speakers.
- Development of Portuguese, Greek, Belgium, Czech Republic, Carriibbean units initiated
| Australia | apsu@chw.edu.au |
| Britain | enquiries@rcpch.ac.uk |
| Canada | jo-anne_doherty@hc-sc.gc.ca |
| Germany | ag.epi@lrz.uni-muenchen.de |
| Republic of Ireland | gild@iol.ie |
| Latvia | aspedlat@com.latnet.lv |
| Malaysia | jho@pc.jaring.my |
| Netherlands | r.pereira@pg.tno.nl |
| New Zealand | nzpsu@stonebow.otago.ac.nz |
| Papua New Guinea | hopepng@datec.com.pg |
| Portugal | ana.moreira@sb.com |
| Switzerland | hans-peter.zimmermann@bag.admin.ch |
| Wales | John.Morgan@eglam-tr.wales.nhs.uk |
Table 4 shows conditions currently studied by multiple Paediatric Surveillance Units.