Cerebral palsy registries

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Abstract

Cerebral palsy (CP) registers appear to be appropriate tools for answering questions regarding the prevalence and characteristics of this common childhood disability. Registers are population databases issuing from multiple sources, relying on a clear definition and inclusion and exclusion criteria of CP, and requiring a mix of skills with the collaboration of obstetricians, pediatricians, and epidemiologists. In Europe alone there are 18 different CP registers or population data collections on CP, and collaborative research efforts exist through a European network. Data collection on CP has also been done in Australia (register), the United States (surveys), and Canada (register). Beside monitoring trends, other public health contributions of CP registers might be to reduce the frequency of CP and to improve the quality of life of children with CP. CP registers are useful to clinicians by enabling them to identify subgroups of children requiring specific etiologic investigations, and also to provide more accurate information to the parents of children with CP.

Section snippets

Design of registers

The latter half of the twentieth century brought increasing growth in the number of registers and databases set up to record and monitor a diversity of diseases for a range of purposes. The numbers of such registers have escalated with the steady improvements in information technology.

Many hospitals, especially those that are centers of excellence, have set up databases. Initially these databases were created for administrative purposes, for example, keeping track of patients seen and

Registers in europe

The first CP registers in Europe were started in Sweden (1954), England (1966) Ireland (1966), and Denmark (1950),14, 15, 16, 17 with the aim of monitoring trends and describing clinical types of CP children. Information from these registers first alerted the scientific community that, in the pre-neonatal intensive care era (1970s), a drop in perinatal mortality rates was not necessarily associated with a parallel drop in perinatal morbidity rates. Subsequently, registers have been established

Registers or geographical data collection outside Europe

An important CP register was established in Western Australia, with the first birth year cohort (1956) registered in 1975.35 As a result of the availability of neonatal intensive care data and a complete perinatal database in the same area, the team working with this register has contributed greatly to the study of the etiology of CP.36 This register has now expanded to cover the southern and northeastern areas of Australia, with a population covered of more than 100,000 live births per year.

No

Contribution of CP registers from a clinician’s point of view

A register never should be an endpoint in itself, but rather should serve as a useful resource to the healthcare community, the child, or the family. The establishment of a CP register should help to focus the knowledge and ideas of a group of professionals that may include obstetricians, pediatricians, pediatric neurologists, statisticians, nurse specialists, and therapists.

A robust dataset allows clinicians and researchers to investigate possible etiologic factors in CP. For many years, the

Use of CP registers in research

CP registers can be used to investigate the origins of CP using, for instance, a case-control study design, because it provides an unbiased sample of cases from a geographically defined population. Controls need to be selected from the same population, or else routinely collected data for the whole birth population, if available, may be used for comparison purposes. Comparing the frequency of demographic, clinical, and other factors in cases and controls identifies risk factors. The

Conclusion

The failure of child health information systems to monitor trends and rates of childhood disability has been highlighted in the United Kingdom.51 Registers are different from routine information systems, because their data are more accurate and the completeness of ascertainment is better. There is a need for methodological rigor when compiling a register.

Some registers of childhood impairments focus not only on CP, but also on other impairments, including intellectual and sensorial disorders.

Acknowledgements

Acknowledgment to all members of Surveillance of Cerebral Palsy in Europe for discussions on this topic during several years.

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