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Aim: This paper introduces the Surveillance of Cerebral Palsy in Europe (SCPE) classification of events contributing to postneonatally acquired cerebral palsy, presents its interrater reliability, and describes the cases identified in the SCPE database., Method: The development of the classification, based on literature review and expert discussions, resulted in six main categories and 19 subcategories. The first chronological event designated as the primary event was mainly reported. Interrater reliability was assessed through online exercise providing 24 clinical vignettes representing single/complex pathways. Percent agreement and Gwet's AC1 index of reliability were estimated. Primary events were described using data of 221 children born between 2008 and 2012., Results: Thirty-nine professionals (21 registries) participated in the reliability exercise. Substantial overall agreement was reached (0.75), with some contrast between complex (0.48, moderate agreement) and single events involved (0.89, almost perfect). The distribution of primary events showed that 32.1% were infections (category A), 23.1% head injuries (B), 15.4% related to surgery or medical interventions (C), 13.1% cerebrovascular accidents (D), 9.1% hypoxic brain damaging events of other origins (E), and 7.2% miscellaneous (F)., Interpretation: This classification allows all the events involved to be recorded while consistently reporting the primary event, and may be used in different settings., What This Paper Adds: A standardized classification enables the description of the events contributing to postneonatal cerebral palsy (CP). The first chronological event in complex pathway leading to CP is coded. Category choice and coding of the primary event identify preventable situations. The detailed 2-level classification is easy to use in various settings. Substantial overall interrater reliability shows that main categories can be consistently differentiated., (© 2023 The Authors. Developmental Medicine & Child Neurology published by John Wiley & Sons Ltd on behalf of Mac Keith Press.)

Background and Objectives: To report on prevalence, associated impairments, severity, and neuroimaging findings in children with ataxic cerebral palsy (CP)., Methods: In children coded as having ataxic CP in the Central database of Joint Research Center-Surveillance of Cerebral Palsy in Europe (JRC-SCPE) and born during 1980-2010, birth characteristics, severity profiles including associated impairments, neuroimaging patterns, and the presence of syndromes were analyzed. Definitions were according to validated SCPE guidelines. Prevalence over time was estimated using Poisson regression., Results: In total, 679 children with ataxic CP were identified in 20 European CP registers. The proportion with ataxic CP was 3.8% and varied from 0% to 12.9%. Prevalence over time showed no significant trend. Approximately 70% of children with ataxic CP were able to walk, and 40% had severe intellectual impairment and a high impairment index. Children with ataxic CP were mostly born at term (79%) and with normal birth weight (77%). Neuroimaging patterns revealed normal findings in 29%, brain maldevelopments in 28.5%, miscellaneous findings in 23.5%, and brain injuries in 19%, according to the SCPE classification. Genetic syndromes were described in 9%., Discussion: This register-based multicenter study on children with ataxic CP provides a large sample size for the analysis of prevalence, severity, and origin of this rare CP subtype. Even with strict inclusion and classification criteria, there is variation between registers on how to deal with this subtype, and diagnosis of ataxic CP remains a challenge. Ataxic cerebral palsy differs from other CP subtypes: children with ataxic CP have a disability profile that is more pronounced in terms of cognitive than gross motor dysfunction. They are mostly term born and the origin rarely suggests acquired injuries. In addition to neuroimaging, a comprehensive genetic workup is particularly recommended for children with this CP type.

Aim: To describe the birth prevalence, temporal trends, and clinical outcomes of twins, triplets, or quadruplets with cerebral palsy (CP)., Method: This was a cross-sectional study using data for twins, triplets, and quadruplets with prenatally or perinatally acquired CP and pooled from the Surveillance of Cerebral Palsy in Europe network (born 1992-2009) and Australian Cerebral Palsy Register (born 1993-2009). Children were at least 4 years old at time of registration. Children born in regions with population ascertainment and available denominator data were included in prevalence calculations (n=1033 twins, 81 triplets, and 11 quadruplets). Clinical data from children registered in all participating registers were described, including 2163 twins (56% male), 187 triplets (59% male), and 20 quadruplets (45% male)., Results: The birth prevalence of CP was higher with increasing plurality (twins 6.5 per 1000 live births [95% confidence interval {CI} 6.1-6.9], triplets 17.1 [95% CI 13.6-21.2], quadruplets 50.7 [95% CI 25.6-88.9]); however, prevalence by gestational age was similar across all pluralities. Between 1992-1994 and 2007-2009, prevalence of CP among twins declined (p=0.001) but prevalence of CP among triplets did not change significantly over time (p=0.55). The distributions of Gross Motor Function Classification System, epilepsy, and impairments of intellect, vision, and hearing were similar regardless of plurality., Interpretation: The data combined from two CP register networks indicated that triplets and quadruplets had increased risk of CP compared to twins. The higher prevalence of CP in triplets and quadruplets is due to their higher risk of preterm birth. Prevalence of CP among twins significantly declined in Europe and Australia. Clinical outcomes were similar for all multiple births., (© 2021 Mac Keith Press.)

Multiple births (twins or higher order multiples) are increasing in developed countries and may present higher risk for cerebral palsy (CP). However, few studies can reliably investigate trends over time because these outcomes are relatively rare., Objective: We pooled data from European CP registers to investigate CP birth prevalence and its trends among single and multiple births born between 1990 and 2008., Design: Population cohort study., Setting: 12 population-based registers from the Surveillance of Cerebral Palsy in Europe collaboration., Participants: 4 446 125 single and multiple live births, of whom 8416 (0.19%) had CP of prenatal or perinatal origin., Main Outcomes: CP diagnosis ascertained in childhood using harmonised methods; CP subtype; Motor impairment severity among CP cases., Results: The rate of multiple births increased from 1990. Multiples displayed higher risk for CP (RR=4.27, 95% CI 4.00 to 4.57). For singletons and multiples alike, risk for CP was higher among births of lower gestational age (GA) or birth weight (BW). However, CP birth prevalence declined significantly among very preterm (<32 weeks) and very low BW (<1500 g) multiples. Singletons and multiples with CP displayed similar severity of motor impairment., Conclusions: Between 1990 and 2008, CP birth prevalence decreased steadily among multiples with low GA or BW. Furthermore, multiples with CP display similar profiles of severe motor impairment compared with CP singletons. Improvements in management of preterm birth since the 1990s may also have been responsible for providing better prospects for multiples., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Surveillance of cerebral palsy in Europe (SCPE) presents the first population-based results on neuroimaging findings in children with cerebral palsy (CP) using a magnetic resonance imaging classification system (MRICS)., Method: MRIs of children with CP born between 1999 and 2009 from 18 European countries were analyzed. MRICS identifies patterns of brain pathology according to timing during brain development which was analyzed with respect to CP subtypes and gestational age., Results: MRIs or written reports from 3,818 children were available. The main clinical characteristics were similar to the 5,415 without such data. Most frequent was predominant white matter injury (49%), followed by predominant gray matter injury (21%). Maldevelopments were found in 11% of cases. Miscellaneous findings were present in 8.5% and normal findings in 10.6%. MRI patterns of children with unilateral spastic, bilateral spastic, and dyskinetic CP were mainly lesional (77, 71, and 59%, respectively), whereas children with ataxic CP had more maldevelopments, miscellaneous, and normal findings (25, 21, and 32%, respectively). In children born preterm, predominant white matter injury was most prevalent (80% in children born <32 weeks of gestation)., Conclusion: Analysis of MRI in the European CP database identified CP as a mainly lesional condition on a large population basis, maldevelopments were relatively uncommon. An exception was ataxic CP. Children born preterm mostly presented with a lesion typical for their gestational age (GA) at birth. The decreasing prevalence of CP in this group suggests that progress in perinatal and neonatal medicine may lead to a reduction of these lesions., Competing Interests: None declared., (Georg Thieme Verlag KG Stuttgart · New York.)

Objective: This article describes associated impairments in children with cerebral palsy (CP) and its subtypes., Method: Children born between 1990 and 2006 recorded in the Surveillance of Cerebral Palsy in Europe common database were studied. An "impairment index" characterized severity of impairments and their combinations., Results: Amongst the 11,015 children analyzed, 56% ( n  = 5,968) could walk unaided, 54% (4,972) had normal or near-normal intellect (intelligence quotient ≥ 70). Except for ataxic CP, associated impairments were less frequent when walking ability was preserved. The impairment index was low (walking unaided and normal or near-normal intellect) in 30% of cases; 54% ( n  = 1,637) in unilateral spastic, 24% ( n  = 79) in ataxic, 18% ( n  = 913) in bilateral spastic, and 7% ( n  = 50) in dyskinetic CP. Around 40% had a high impairment index (inability to walk and/or severe intellectual impairment ± additional impairments)-highest in dyskinetic (77%, n  = 549) and bilateral spastic CP (54%, n  = 2,680). The impairment index varied little in birth weight and gestational age groups. However, significantly fewer cases in the birth weight group ≤ 1,000 g or gestational age group ≤ 27 weeks had a low impairment index compared to the other birth weight and gestational age groups (23 and 24% vs. between 27 and 32%)., Conclusion: Thirty percent of the children with CP had a low impairment index (they were able to walk unaided and had a normal or near-normal intellect). Severity in CP was strongly associated to subtype, whereas the association was weak with birth weight or gestational age., Competing Interests: None declared., (Georg Thieme Verlag KG Stuttgart · New York.)

Aims: This study aims to describe and compare goals and methods, characteristics of children with cerebral palsy (CP), and to compare prevalence of CP in the Surveillance of Cerebral Palsy in Europe (SCPE) and the Australian Cerebral Palsy Register (ACPR)., Methods: This study compares the objectives of the two networks and their working practices; key documents from both above-mentioned networks were used. Children included in the comparison of the descriptive profile and prevalence measures were born between 1993 and 2009 for Australian data and between 1980 and 2003 for SCPE., Results: SCPE contributed 10,756 cases and ACPR 6,803. There were similar distributions of motor type, severity, and gestational age groups, except for the proportion of the lowest gestational age category (range, 20-27 weeks) which was twice higher in the ACPR (13 vs. 7%). Associated impairment proportions were also similar except for severe vision impairment which was more than twice as high in SCPE as in the ACPR (11 vs. 4%), but most likely due to a subtle difference in definitions. Prevalence rates were comparable at the same time point in the different groups of birth weight, and declined over time, except for the moderately low birth weight in ACPR., Conclusion: Two CP networks representing two continents have compared their major characteristics to facilitate the comparison across their study populations. These characteristics proved to be similar with only marginal differences. This gives additional strength to the observation in both networks that CP prevalence is decreasing which is of great importance for families and health care systems., Competing Interests: The authors have stated that they had no interests which might be perceived as posing a conflict or bias., (Georg Thieme Verlag KG Stuttgart · New York.)

Aim: To monitor the trends in prevalence of cerebral palsy (CP) by birthweight in Europe, 1980 to 2003., Method: Data were collated from 20 population-based registers contributing to the Surveillance of Cerebral Palsy in Europe database. Trend analyses were conducted in four birthweight groups: <1000g (extremely low birthweight [ELBW]); 1000 to 1499g (very low birthweight [VLBW]); 1500 to 2499g (moderately low birthweight [MLBW]); and >2499g (normal birthweight [NBW])., Results: The overall prevalence of CP decreased from 1.90 to 1.77 per 1000 live births, p<0.001, with a mean annual fall of 0.7% (95% confidence interval [CI] -0.3% to -1.0%). Prevalence in NBW children showed a non-significant trend from 1.17 to 0.89 per 1000 live births (p=0.22). Prevalence in MLBW children decreased from 8.5 to 6.2 per 1000 live births (p<0.001), but not linearly. Prevalence in VLBW children also declined from 70.9 to 35.9 per 1000 live births (p<0.001) with a mean annual fall of 3.4% (95% CI -2.4% to -4.3%). Prevalence in ELBW children remained stable, at a mean rate of 42.4 per 1000 live births., Interpretation: The decline in prevalence of CP in children of VLBW continues, and confirms that previously reported. For the first time, there is also a significant decline among those of MLBW, resulting in a significant overall decrease in the prevalence of CP., (© 2015 Mac Keith Press.)

Objective: For a long time, the benefit of a caesarean delivery in the prevention of cerebral palsy (CP) has been put forward, which was based on the assumption that CP is due to asphyxia in more than 50 % of the cases. However, from register-based data, this rate has been estimated less than 4 %. The aim of this study was to evaluate whether the rate of caesarean sections for fetal indication was correlated with the prevalence rate of CP in a French county., Patients and Methods: This was an ecological study of register-based prevalence estimates of children with CP (postnatal cases excluded) born between 1997 and 2003 in a French county compared with the rates of caesarean section for fetal distress obtained from the maternal and infant protection service of the county., Results: Whilst the rate of caesarean section for fetal indication increased by 44% during the period studied, the prevalence of CP remained nearly stable around 1.5 per 1000 live births. There was no correlation between caesarean section and CP prevalence (r'=-0.36, P=0.43)., Discussion and Conclusion: The present study was in accordance with the results of a recent meta-analysis which concluded that emergency and prophylactic caesarean deliveries were not efficient in the prevention of CP. Indication of caesarean delivery for foetal heart rhythm anomaly, which is the most relevant cause for the growing rate of caesarean sections, should be justified by additional examinations in ambivalent cases, in order not to consider it as defensive medicine, which is ethically and therefore juridically blameworthy., (Copyright © 2014 Elsevier Masson SAS. All rights reserved.)

The present paper aims to analyze trends over time in prevalence of cerebral palsy of post-neonatal origin, to investigate whether changes are similar according to severity and to describe the disability profile by etiology. Post-neonatal cases, birth years 1976 to 1998, were identified from the Surveillance of Cerebral Palsy in Europe collaboration (19 population-based registries). A recognized causal event occurring between 28 days and 24 months of age was considered to define the cases. Trends in prevalence were explored using graphical methods (Lowess and Cusum control chart) and modeled with negative binomial regressions. Over the study period, 404 cases were identified as post-neonatal cases (5.5% of the total). Mean prevalence rate was 1.20 per 10,000 live births (95% CI [1.08-1.31]). A significant downward trend was observed (p=0.001), with an accentuated decrease in the 1990 s. The prevalence of severe cases which account for around one third of the total also significantly decreased over time (p<0.001). In 46% of cases, an infectious aetiology was reported; the corresponding prevalence significantly decreased since 1989. No significant decrease was observed for the rate of cases due to a vascular episode or of traumatic origin. Our results emphasize the need of large population-based surveillance systems to reliably monitor trends in prevalence in rare subgroups of children like those with acquired cerebral palsy. The decrease of the overall prevalence as well as those of the most severe cases may be partly due to public health actions targeted to prevent such events., (Copyright © 2013 Elsevier Ltd. All rights reserved.)

Aim: To evaluate the interrater reliability of the inclusion in registries and classification of children with cerebral palsy (CP)., Method: Two studies were conducted. In study 1, 12 paediatricians from 11 countries viewed video sequences of 12 children with or without CP (nine males, three females; median age 6y; range 2-16). In study 2, 19 professionals from eight countries participated in an online exercise. They had to classify the same children but based on written vignettes. All participants had to evaluate whether the child had CP, the neurological subtype (Surveillance of Cerebral Palsy in Europe classification system), and gross motor function level (Gross Motor Function Classification System [GMFCS]). Kappa (κ) coefficients were calculated for categorical variables and intraclass correlation coefficients (ICCs) for ordinal data., Results: Reliability was excellent in assessing whether or not a child had CP in study 1 (κ=1.00) and substantial in study 2 (κ=0.73); 95% confidence interval [CI] 0.58-0.87). For the neurological subtype, overall κ between paediatricians was 0.85 (95% CI 0.68-0.98), with full agreement observed for eight children. In study 2, overall κ was 0.78 (95% CI 0.61-0.91) with full agreement seen for five children. For the GMFCS, the ICC was 0.88 (95% CI 0.78-0.95) in study 1 and 0.80 (95% CI 0.64-0.91) in study 2., Interpretation: Reliability was excellent for all characteristics classified by paediatricians viewing the videos and substantial for professionals reading vignettes., (© The Authors. Developmental Medicine & Child Neurology © 2012 Mac Keith Press.)

Background: Although epilepsy is common in children with cerebral palsy (CP), no data exists on prevalence rates of CP and epilepsy., Aims: To describe epilepsy in children with CP, and to examine the association between epilepsy and neonatal characteristics, associated impairments and CP subtypes., Methods: Data on 9654 children with CP born between 1976 and 1998 and registered in 17 European registers belonging to the SCPE network (Surveillance of Cerebral Palsy in Europe) were analyzed., Results: A total of 3424 (35%) children had a history of epilepsy. Among them, seventy-two percent were on medication at time of registration. Epilepsy was more frequent in children with a dyskinetic or bilateral spastic type and with other associated impairments. The prevalence of CP with epilepsy was 0.69 (99% CI, 0.66-0.72) per 1000 live births and followed a quadratic trend with an increase from 1976 to 1983 and a decrease afterwards. Neonatal characteristics independently associated with epilepsy were the presence of a brain malformation or a syndrome, a term or moderately preterm birth compared with a very premature birth, and signs of perinatal distress including neonatal seizures, neonatal ventilation and admission to a neonatal care unit., Conclusions: The prevalence of CP with epilepsy followed a quadratic trend in 1976-1998 and mirrored that of the prevalence of CP during this period. The observed relationship between epilepsy and associated impairments was expected; however it requires longitudinal studies to be better understood., (Copyright © 2011 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.)

Aim: The aim of this study was to describe trends in prevalence, subtypes, and severity among children with cerebral palsy (CP) born moderately preterm (MPT; (gestational age 32-36 wks) or at moderately low birthweight (MLBW; 1500-2499 g) in Europe., Method: We conducted trend analyses of data from 903 children with CP born between 1980 and 1998 who were MPT (gestational age 32-36 wks), taken from 11 registers in the Surveillance of Cerebral Palsy in Europe database and from 1835 children with CP who were born at moderately low birthweight (1500-2499 g), taken from 14 registers in the Surveillance of Cerebral Palsy in Europe database., Results: The overall annual prevalence of CP in children born MPT varied between 12.2 (95% confidence interval [CI] 8.5-17.1) per 1000 live births in 1983 and 4.5 (95% CI 3.2-6.3) per 1000 in 1997. There was a significant decrease in the prevalence over time adjusted for register, with an annual change in prevalence of -3% (95% CI -5 to -2%). This was due to a decrease in the prevalence of bilateral spastic CP (annual change -5%; 95% CI -7 to -3%)., Interpretation: There was a trend towards a decrease in the prevalence of CP among children born MPT, but no difference in prevalence among children born at MLBW. Both results may represent an improvement in perinatal and neonatal care., (© The Authors. Developmental Medicine & Child Neurology © 2011 Mac Keith Press.)

Time trends for cerebral palsy (CP) prevalence in children born > or =2,500 g vary across studies and scarce data exist on trends by subtype of CP. The objective of this study was to describe changes in prevalence of CP in infants born > or =2,500 g between 1980 and 1998 in Europe. Data were collated from the SCPE (Surveillance of Cerebral Palsy in Europe collaboration) common database. Poisson regression was used to test for change in prevalence over time. Birth year and register effects were explored and trends in prevalence were estimated by CP subtype and severity. Four thousand and two children with CP and birthweight > or =2,500 g were recorded in 15 population based-registers. The overall prevalence of CP was 1.16 per 1,000 live births (99% CI, 0.88-1.48) in 1980 and 0.99 (CI, 0.80-1.20) in 1998. The trend was not significant (P = .14), except in two registers. However, there were significant changes in the prevalence of spastic CP subtypes, with a decrease in the bilateral spastic form (P < .001), and an increase in the unilateral spastic form (P = .004). There was a concurrent reduction in neonatal mortality of children with birthweight > or =2,500 g: from 1.7 (CI, 1.4-2.1) to 0.9 (CI, 0.7-1.1) per 1,000 live births. In conclusion, for children born with birthweight > or =2,500 g, the prevalence of CP in Europe was stable in spite of changes by subtype and a significant decrease in neonatal mortality.

Résumé Objectif Le rôle bénéfique de la césarienne dans la prévention de la paralysie cérébrale (PC) a été longtemps évoqué. Il reposait sur l’hypothèse d’une forte prévalence (supérieure à 50 %) de l’asphyxie perpartum dans la genèse de cette pathologie, ce qui n’a pas été confirmé par les données en population de registres spécifiques dont l’estimation est inférieure à 4 % des cas de PC. Notre objectif était d’analyser s’il existait une corrélation entre l’augmentation du taux de césariennes et la prévalence de la PC dans un département français. Patients et méthodes Une étude écologique a été réalisée reposant sur les taux de césarienne pour indication fœtale (fournis par le Service de protection maternelle et infantile de l’Isère) et la prévalence de la PC, causes post-natales exclues, pour les enfants nés de 1997 à 2003 (données du registre des handicaps de l’enfant et observatoire périnatal). Résultats En sept ans, le taux de césarienne pour indication fœtale en population avait augmenté de 44 % ( p < 0,001) passant de 4,4 % des naissances à 6,3 % des naissances alors que le taux de PC de 1,5 pour 1000 naissances vivantes était resté presque identique pendant la même période. Il n’y avait pas de corrélation entre le taux de césarienne et la prévalence de la PC ( r ’ = −0,36, p = 0,43). Discussion et conclusion Cette étude est en cohérence avec les résultats d’une méta-analyse récente, qui concluait à l’absence de rôle préventif de la césarienne prophylactique ou en urgence pour réduire significativement le taux de PC. L’indication de césarienne pour anomalies du rythme cardiaque fœtal, cause principale de l’élévation des taux de césarienne, devrait être dans les cas douteux confirmée par des examens de 2 e ligne, sous peine d’être considérée comme le marqueur d’une médecine défensive qui n’est pas éthiquement donc juridiquement acceptable. Objective For a long time, the benefit of a caesarean delivery in the prevention of cerebral palsy (CP) has been put forward, which was based on the assumption that CP is due to asphyxia in more than 50 % of the cases. However, from register-based data, this rate has been estimated less than 4 %. The aim of this study was to evaluate whether the rate of caesarean sections for fetal indication was correlated with the prevalence rate of CP in a French county. Patients and methods This was an ecological study of register-based prevalence estimates of children with CP (postnatal cases excluded) born between 1997 and 2003 in a French county compared with the rates of caesarean section for fetal distress obtained from the maternal and infant protection service of the county. Results Whilst the rate of caesarean section for fetal indication increased by 44% during the period studied, the prevalence of CP remained nearly stable around 1.5 per 1000 live births. There was no correlation between caesarean section and CP prevalence ( r ’ = −0.36, P = 0.43). Discussion and conclusion The present study was in accordance with the results of a recent meta-analysis which concluded that emergency and prophylactic caesarean deliveries were not efficient in the prevention of CP. Indication of caesarean delivery for foetal heart rhythm anomaly, which is the most relevant cause for the growing rate of caesarean sections, should be justified by additional examinations in ambivalent cases, in order not to consider it as defensive medicine, which is ethically and therefore juridically blameworthy. [ABSTRACT FROM AUTHOR]