Foreword.

Abstract

The usefulness of collaborative work between cerebral palsy (CP) registers is little recognized and is important to highlight. With the exciting presentation of data from the Australian CP registers, we can see the breadth of research possible through these efforts. Collaboration between CP registers affords an improvement in power provided by pooling data from different CP registers, which is of particular benefit in certain situations, for example analyzing trends in prevalence rates of CP among very tiny babies, quantifying the higher risk of CP among those born from multiple pregnancies, or studying the association between specific congenital anomalies and CP. It is important, of course, to have some caution when pooling data from different CP registers. It is necessary to have common descriptions of CP1, 2 and to ensure that the data points are sufficiently harmonized to allow accurate pooling. Decisions about the level of harmonization are a great challenge indeed, and can be addressed using repeated reliability studies between registers.3 Further, trends observed from different CP registers also generate new questions that require new investigations. And it is important as well to have some caution when analyzing these data, for example to use adequate statistical tools for multi-centric data to ensure accurate analysis. For example, what does it mean if trends in CP rates are decreasing in some geographical regions and not in others (all areas being population-based registers)? Are these true differences? Either in a single region, country, or continent, either from a single CP register or from a network of CP registers, we need to remember how powerful these data from CP registers can be when correctly analyzed. These data can be used for monitoring and surveillance of course, but are also an excellent resource for clinical epidemiological research in the CP field. Health professionals, policymakers, and persons with CP themselves should be aware of this and the potential benefits available through the excellent data resource that CP registers can provide. Professor Christine Cans Special Issue Associate Editor In the past few years there has been an increase both in the number and in the type of registries in medicine. Registries can be used to identify the medical needs and outcomes for people with specific diseases or conditions, can monitor newly registered medications for side effects, and evaluate the success of new treatments. In addition, the collection of such information, particularly if comprehensive, provides an invaluable resource for various types of research from health systems, health behaviour, and epidemiology, as well as providing baseline data for the design of clinical trials to improve treatment outcomes. This issue of papers uses data from the Australian Cerebral Palsy Register and demonstrates the wide range of research that is possible using population datasets. Some findings are clinically related, and concern correlations between prenatal conditions and birth outcomes, trends in congenital abnormalities over time, the variety of impairments across cohorts, and the social implications of specific impairments, and the possibilities for prevention. In addition, this issue contains three articles examining social–demographic findings from the registry, and policy-specific implications, including an article on the Australian National Disability Insurance Scheme. The supplement reports findings both from the long-standing cerebral palsy registries from Western Australia, Victoria, and South Australia and from data from the relatively new cerebral palsy registries from the remaining states and territories. Since the Australian Cerebral Palsy Register's inception in 2008, the Australian Cerebral Palsy Register Group have worked together to support the work of individual CP registers and to develop a minimum dataset to allow collaboration between them. This work has increased both the volume and the value of the data held, widening the possibility for conducting research to improve the quality of life of those with CP. This is clearly borne out in the following collection of papers and holds out the promise that this systematic collection of data will increase both our understanding of what it is like to live with CP and what can be done to improve the lives of those who do. Dr Nicole Gerrand Consumer Manager, Research Support and Development, Hunter New England Local Health District, Newcastle, Australia