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AIM Determining inclusion/exclusion criteria for cerebral palsy (CP) surveillance is challenging. The aims of this paper were to (1) define inclusion/exclusion criteria that have been adopted uniformly by surveillance programmes and identify where consensus is still elusive, and (2) provide an updated list of the consensus concerning CP inclusion/exclusion when a syndrome/disorder is diagnosed.METHOD Data were drawn from an international survey of CP registers, the New South Wales CP Register (1993)(1994)(1995)(1996)(1997)(1998)(1999)(2000)(2001)(2002)(2003), the Western Australian CP Register (1975Register ( -2008, and the Surveillance of CP in Europe (SCPE; 1976-1998). An expert panel used a consensus building technique, which utilized the SCPE 'decision tree' and the original 'What constitutes cerebral palsy?' paper as frameworks.RESULTS CP surveillance programmes agree on key clinical criteria pertaining to the type, severity, and origin of motor disorder in CP. Further work is warranted to reach agreement for (1) minimum age of survival and maximum age of postneonatal brain injury, and (2) metabolic disorders with highly variable clinical courses/responses to treatment. One hundred and ninety-seven syndromes/disorders were reviewed and advice on their inclusion/ exclusion is provided. INTERPRETATIONWhat constitutes CP will continue to evolve as diagnostics improve.Surveillance programmes throughout the world are committed to addressing their differences regarding inclusion/exclusion criteria for the umbrella term CP.Advances and changes in diagnostic modalities and medical technology since our 1998 publication 'What constitutes cerebral palsy?' 1 have led to requests to revise the paper. Since 1998 we have seen an increase in the number of CP surveillance programmes internationally and their desire for collaboration led to the first World CP Register Day in 2009.2 Inclusion/exclusion criteria in CP surveillance were key points discussed. It was acknowledged by participants that whilst each group must meet the specific needs of their own individual surveillance programme, it is advantageous to have consensus across programmes regarding core inclusion/exclusion criteria. Consensus in criteria provides opportunities to pool data across registers, increase power for research, monitor trends over time between and across regions, and to evaluate new population level interventions such as magnesium sulphate 3 and cooling. 4 Similarly, homogeneity of inclusion/exclusion criteria is advantageous for researchers using registers as a sampling frame for multicentre trials. This article seeks to (1) define inclusion/exclusion criteria that have been adopted uniformly by surveillance programmes and to illuminate areas where consensus about criteria could not be reached between surveillance programmes, and (2) provide an updated list of the consensus concerning the inclusion or exclusion of CP when a syndrome or disorder is diagnosed. the original 1998 paper 1 or identified in potential registrants of the New South Wales ...

This report describes trends, predictors, and causes of mortality in persons with cerebral palsy (CP) using individuals identified by the Western Australian Cerebral Palsy Register and born between 1958 and 1994. Two thousand and fourteen people were identified (1154 males, 860 females), of whom 225 had died by 1 June 1997. Using date-of-death data, crude and standardized mortality rates were estimated and predictors of mortality sought using survival analysis stratified by decade of birth, description of impairments, and demographic and perinatal variables. For those born after 1967, the cause of death profile was examined over time. Mortality exceeded 1% per annum in the first 5 years and declined to age 15 years after which it remained steady at about 0.35% for the next 20 years. The strongest single predictor was intellectual disability, but all forms of disability contributed to decreased life expectancy. Half of those with IQ/DQ score <20 survived to adulthood, increasing to 76% with IQ/DQ score 20-34, and exceeding 92% for higher scores. Severe motor impairment primarily increased the risk of early mortality. Despite there being 72 persons aged from 25 to 41 years with severe motor impairment in our data set, none had died after the age of 25 years. Infants born after more than 32 weeks' gestation were at significantly higher risk of mortality than very preterm infants, accounted for by their higher rates of intellectual disability. No improvements in survival of persons with CP were seen over the study period despite advances in medical care, improved community awareness, and the increasing proportion of very preterm births among people with CP. This may be the result of improved neonatal care enabling the survival of infants with increasingly severe disabilities.