Australian Paediatric Surveillance Unit

Director

Deputy director

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Overview

We conduct research into rare childhood conditions, an area where there are often significant gaps in knowledge. We provide vital information on a range of rare conditions or rare complications of more common conditions including infectious, vaccine-preventable, mental health, congenital and genetic conditions and rare injuries for which detailed national data are not available from other sources. Our research outcomes contribute to the development of public health policy and inform clinical practice.

Over 1300 or about 92% of all paediatricians and other child health clinicians in Australia participate in monthly APSU surveillance by providing de-identified data.

Research achievements

Our excellent track record in influenza surveillance and the establishment of the Paediatric Active Enhanced Surveillance (PAEDS) system enabled a rapid response to the 2009 swine flu H1N1 pandemic. With an H1N1 Emergency Grant from the NHMRC, our quick and timely collection of data showed that 30% of children admitted to hospital with HIN1 developed serious complications including neurological and respiratory problems. About half of these children did not have any chronic medical problems, supporting the need for vaccination of all children, not just those with underlying chronic disease.

We established new national studies into serious childhood conditions such as Systemic Lupus Erythematosus and Neonatal Hyperbilirubinaemia, or severe jaundice. The information collected will enable paediatricians to improve treatment for children with these conditions.

We began national data collection on subdural haematoma (SDH) in children aged less than two, which is a rare but significant cause of morbidity and mortality in infancy. The condition can occur due to traumatic delivery, trauma in utero, accidents or non-accidental trauma. Sadly the most common cause of SDH in children aged less than two years is inflicted, non-accidental injuries which are preventable. Despite the seriousness of SDH, there are no national data to describe the size and scope of this problem. Our work will enable international comparisons with New Zealand and Britain, which have already established national data sets.

On behalf of the National Rare Diseases Working Group, we drafted a National Plan for Rare Diseases and are currently consulting with key national organisations to seek comment and input. We have also made important strategic links with organisations that support families affected by rare diseases such as the Steve Waugh Foundation, SMILE Foundation and Association for Genetic Support Australasia (AGSA). With their support we started a program of research into the impacts of rare diseases on families, clinicians and health services to provide information that will support the development of new health and support services and to underpin advocacy.