Sarah McIntyre

To describe cerebral palsy (CP) surveillance programmes and identify similarities and differences in governance and funding, aims and scope, definition, inclusion/exclusion criteria, ascertainment and data collection, to enhance the potential for research collaboration. Representatives from 38 CP surveillance programmes were invited to participate in an online survey and submit their data collection forms. Descriptive statistics were used to summarize information submitted. Twenty-seven surveillance programmes participated (25 functioning registers, two closed owing to lack of funding). Their aims spanned five domains: resource for CP research, surveillance, aetiology/prevention, service planning, and information provision (in descending order of frequency). Published definitions guided decision making for the definition of CP and case eligibility for most programmes. Consent, case identification, and data collection methods varied widely. Ten key data items were collected by all programmes and a further seven by at least 80% of programmes. All programmes reported an interest in research collaboration. Despite variability in methodologies, similarities exist across programmes in terms of their aims, definitions, and data collected. These findings will facilitate harmonization of data and collaborative research efforts, which are so necessary on account of the heterogeneity and relatively low prevalence of CP.

Proportions of cases of cerebral palsy (CP) with congenital anomalies recorded in Australian CP registers range from 15% to 40%. The anomalies seen in CP are extremely variable. We have identified that CP registers often do not have quality data on congenital anomalies, necessitating linkage with congenital anomaly registers. However, a lack of unified processes and definitions in congenital anomaly registers and data collections means that linkages are complex, need to be carefully planned, and limitations acknowledged. Historically in CP research, congenital anomalies have been classified by International Classification of Disease codes, then combined into brain and other major and minor anomalies. Systems have been developed to classify congenital anomalies into aetiologically related groups, but such a classification has yet to be trialled in CP. It is anticipated that primary prevention of a small proportion of cases of CP is possible through the primary prevention of congenital anomalies, especially those due to teratogens. Owing to the anticipated low prevalence of each subgroup, global collaboration will be required to further these lines of enquiry.

Congenital cytomegalovirus (cCMV) infection can result in poor outcomes including cerebral palsy (CP). The aim of this study was to describe the incidence and comorbidities of CP reported to the Australian Cerebral Palsy Register (ACPR) as attributed to cCMV infection. This was a retrospective population-based study. Cases were drawn from Australian state CP registers with population level ascertainment, 1993 to 2003 (n=2265; 56.4% males, Gross Motor Function Classification System [GMFCS] ratings available for Victorian cases only: 70% GMFCS levels I to III and 30% GMFCS levels IV to V). Clinical data were extracted and cases with cCMV reported as a known cause were compared with cases where cCMV was not reported. Children with cCMV (n=34; 12 males, 22 females; mean [SD] gestational age, 36.4 wk [4.4], range 24-41 wk) accounted for 1.5% of CP cases; 2.9 per 100,000 live births, (95% confidence intervals 1.9-3.9). When compared with CP cases where cCMV was not reported, proportionally, more CP cases with cCMV were born to younger mothers (p<0.001), were female (64% vs 43%, p=0.014), had spastic quadriplegia (73% vs 21%, p<0.001), required wheeled mobility i.e. GMFCS IV or V (78% vs 28%, p<0.001), had epilepsy (70% vs 30%, p<0.001), deafness (40% vs 2%, p<0.001), functional blindness (20% vs 5%, p<0.001), and severe communication impairment (71% vs 25%, p<0.001). cCMV is an important potentially preventable cause of CP and is associated with severe disability and female sex in cases reported to the ACPR. Future studies utilising prospective sample collection for cCMV testing are needed to confirm these findings.

To examine the relationships between clinical or histological chorioamnionitis and cerebral palsy using a meta-analysis approach. A systematic review of the literature appeared in PubMed between 2000 and 2009 was conducted using the search terms "cerebral palsy" and "infection," with broad-scope variations in terminology of "white matter damage," "periventricular leukomalacia," "cystic periventricular leukomalacia," "chorioamnionitis," "intrauterine infection," "intraventricular hemorrhage," "funisitis,"…

ABSTRACT In 2010, the Australian National Health and Medical Research Council (NHMRC) endorsed Australian and New Zealand clinical practice guidelines that recommend magnesium sulphate to be given to women at risk of imminent, very early preterm birth (at less than 30 weeks gestation) for the prevention of death and cerebral palsy in their infants (The Antenatal Magnesium Sulphate for Neuroprotection Guideline Development Panel 2010). Now, the WISH Project (Working to Improve Survival and Health of babies born preterm), supported by the Cerebral Palsy Alliance, is working to bring Australian and New Zealand clinical practice in line with the recommendations from these guidelines (ARCH 2013).

Background/aim: Individual and workplace barriers affect uptake of evidence-based practice (EBP). This study evaluated the effects of a 1-day workshop with workplace supports on allied health professionals’ EBP knowledge and behaviour. Methods: A prospective longitudinal pre-post design was used. A total of 88 allied health professionals participated. Knowledge was measured using the Adapted Fresno Test (AFT), behaviour was measured using frequency counts

Objectives: For singletons with cerebral palsy (CP) who were born at term, the goals were (1) to determine the proportion not admitted to a Special Care Unit/NICU (NICU), (2) to compare clinical descriptions of those admitted to NICUs and those not admitted, and (3) to identify neonatal predictors of CP among those not admitted to a NICU. Methods: A total-population

ABSTRACT In 2010, the Australian National Health and Medical Research Council (NHMRC) endorsed Australian and New Zealand clinical practice guidelines that recommend magnesium sulphate to be given to women at risk of imminent, very early preterm birth (at less than 30 weeks gestation) for the prevention of death and cerebral palsy in their infants (The Antenatal Magnesium Sulphate for Neuroprotection Guideline Development Panel 2010). Now, the WISH Project (Working to Improve Survival and Health of babies born preterm), supported by the Cerebral Palsy Alliance, is working to bring Australian and New Zealand clinical practice in line with the recommendations from these guidelines (ARCH 2013).

Neonatal encephalopathy, a clinical syndrome affecting term-born and late preterm newborn infants, increases the risk of perinatal death and long-term neurological morbidity, especially cerebral palsy. With the advent of therapeutic hypothermia, a treatment designed for hypoxic or ischaemic injury, associated mortality and morbidity rates have decreased. Unfortunately, only about one in eight neonates (95% confidence interval) who meet eligibility criteria for therapeutic cooling apparently benefit from the treatment. Studies of infants in representative populations indicate that neonatal encephalopathy is a potential result of a variety of antecedents and that asphyxial complications at birth account for only a small percentage of neonatal encephalopathy. In contrast, clinical case series suggest that a large proportion of neonatal encephalopathy is hypoxic or ischaemic, and trials of therapeutic hypothermia are specifically designed to include only infants exposed to hypoxia or ischaemia. This review addresses the differences, definitional and methodological, between infants studied and investigations undertaken, in population studies compared with cooling trials. It raises the question if there may be subgroups of infants with a clinical diagnosis of hypoxic-ischaemic encephalopathy (HIE) in whom the pathobiology of neonatal neurological depression is not fundamentally hypoxic or ischaemic and, therefore, for whom cooling may not be beneficial. In addition, it suggests approaches to future trials of cooling plus adjuvant therapy that may contribute to further improvement of care for these vulnerable neonates.

Abstract Objective: To systematically review meta-analyses (MAs) and randomised controlled trials (RCTs) of interventions for infants at risk of cerebral palsy (CP), to determine if consensus exists in study end-points. Methods: MAs within the "Neonatal" and "Pregnancy and Childbirth" Review Groups in Cochrane Database of Systematic Reviews (to June 2011) were included if they contained risk factors for CP as a study end-point, and were either published in 2010 or 2011 or cited >20 times in Sciverse Scopus. Up to 20 RCTs from each MA were included. Outcome measures, definitions and cut-points for ordinal groupings were extracted from MAs and RCTs and frequencies calculated. Results: Twenty-two MAs and 165 RCTs were appraised. High consistency existed in types of outcome domains listed as important in MAs. For 10/16 most frequently cited outcome domains, <50% of RCTs contributed data for meta-analyses. Low consistency in outcome definitions, measures, cut-points in RCTs and long-term follow-up prohibited data aggregation. Conclusions: Variation in outcome measurement and long-term follow up has hampered the ability of RCTs to contribute data on important outcomes for CP, resulting in lost opportunities to measure the impact of maternal and neonatal interventions. There is an urgent need for and long-term follow up of these interventions and an agreed set of standardised and clinically relevant common data elements for study end-points.

To examine the antecedents of cerebral palsy and of perinatal death in singletons born at or after 35 weeks of gestation. From a total population of singletons born at or after 35 weeks of gestation, we identified 494 with cerebral palsy and 508 neonates in a matched control group, 100 neonatal deaths, and 73 intrapartum stillbirths (all deaths in selected birth years). Neonatal death and cerebral palsy were categorized as without encephalopathy, after neonatal encephalopathy, or after neonatal encephalopathy considered hypoxic-ischemic. We examined the contribution of potentially asphyxial birth events, inflammation, fetal growth restriction, and birth defects recognized by age 6 years to each of these outcomes and to intrapartum stillbirths. The odds of total cerebral palsy after potentially asphyxial birth events or inflammation were modestly increased (odds ratio [OR] 1.9, 95% confidence interval [CI] 1.1-3.2 and OR 2.2, 95% CI 1.0-4.2, respectively). However, potentially asphyx...

To examine the relationships between clinical or histological chorioamnionitis and cerebral palsy using a meta-analysis approach. A systematic review of the literature appeared in PubMed between 2000 and 2009 was conducted using the search terms "cerebral palsy" and "infection," with broad-scope variations in terminology of "white matter damage," "periventricular leukomalacia," "cystic periventricular leukomalacia," "chorioamnionitis," "intrauterine infection," "intraventricular hemorrhage," "funisitis," "fetal inflammatory…

'Proposed new definition of cerebral palsy does not solve any of the problems of existing definitions' SIR–The proposed new definition1 set out in the first sentence (32 words), is no shorter than that of Mutch et al.2 (31 words) and does not solve any of the problems of existing ...

To critically assess and develop recommendations for professional development (PD) for occupational therapists in a multisite specialist cerebral palsy occupational therapy service. Quality improvement project based on principles of participatory action research: audit of PD resources/activity; stakeholder consultations and literature review. The PD program goal, resources, strategies, activities and evaluations conducted at the centre were identified and described. Areas for improvement were identified by critically considering the PD program in the context of reviewed literature. There was an assumption that personal change through PD would help attain the organisational goal of clinically competent practitioners who use evidence-based practice in a family-centred context. Future PD plans and evaluations need to explicitly address this assumption. The use of structured reflection and the 'clinical reasoning' conceptual framework was recommended as one way to help personal change from PD to have workplace impact. This project provides a precedent and guide to occupational therapy PD planners regarding a whole-of-organisation approach to developing and maintaining competence through PD.

Our aim was to build on previous research indicating that rates of cerebral palsy (CP) in the Australian state of Victoria are declining, and examine whether severity of impairments is also decreasing. Data on individuals with CP were extracted from the Victorian Cerebral Palsy Register for birth years 1983 to 2009. The yearly rates of dichotomized categories for gross motor function, motor laterality, intellectual impairment, and epilepsy per 1000 neonatal survivors and proportions in the CP cohort were tabulated and plotted by birth gestation. Linear regression modelling was used to fit prediction curves; likelihood ratio tests were used to test for differences in trends between impairment severity groups. Since the mid-1990s, CP rates declined in neonatal survivors of birth at all gestations. Our data suggest that the decreasing CP rates were associated with relatively greater decreases in the rates of Gross Motor Function Classification System levels III to V, bilateral CP, epil...