Impacts of national surveillance for uncommon conditions in childhood

Abstract

The Australian Paediatric Surveillance Unit (APSU) facilitates the conduct of national collaborative research that is consistent with national health priorities, has potential to impact on public health, and addresses gaps in knowledge. Since 1993 paediatricians and other child health specialists have contributed monthly data on rare childhood conditions to the APSU. Over 40 conditions, including infectious diseases, injuries, vaccine-preventable diseases and genetic disorders have been studied. Information on epidemiology, frequency, diagnosis, management and short-term outcomes of these conditions is collected and provides evidence to support changes to clinical practice, prevention policy and allocation of health resources. In this review we give examples of the value of information gathered through the APSU surveillance system in the last 14 years.

Adverse events associated with the use of complementary and alternative medicine in children

“…The APSU methodology has been described in detail previously 7. In summary, the APSU conducts an active surveillance system to detect selected rare disorders of childhood 8. The APSU distributes monthly report cards to Australian paediatricians who indicate any cases seen or that they have nothing to report.…”

Call for a national plan for rare diseases

“…Cases are identified and reported each month by paediatricians throughout Australia. The resulting data have informed clinical practice, public health policy and advocacy, and have contributed to improving the health and well‐being of Australian children 9 . The APSU is funded by the National Health and Medical Research Council and the Department of Health and Ageing.…”

Disease Registries and Outcomes Research in Children

“…[32] As such, while clinical trials are appropriate for initial assessments of treatment efficacy and safety, registries provide an important complement to these data, since they are able to evaluate patient care in a real-life setting, and may support future changes to clinical practice, policies for disease prevention, and distribution of healthcare resources. [33] Evidence of the contributions that registries make to disease management and the quality of patient care has been provided Measuring or improving quality of care and quality of life Assessing natural history; determining the underlying incidence rate or prevalence; examining trends of disease over time, conducting surveillance; identifying groups at high risk; and estimating survival by the cancer field in which establishment of global and national registries has enabled monitoring of malignancies for several decades. Cancer registries play a key role in the implementation of evidence-based strategies for cancer prevention and earlier detection by collecting detailed information that can be used for epidemiological research, cancer control, public health planning, and improved patient care.…”