Surveillance of Cerebral Palsy in Europe: Development of the JRC-SCPE Central Database and Public Health Indicators

The Surveillance of Cerebral Palsy in Europe (SCPE) network was established in 1998, bringing together professionals and researchers working in population-based registries of children with Cerebral Palsy (CP) across Europe. The aims of the network are to collect population data on CP to inform and improve understanding of the disease, to raise standards of care for children with CP, disseminate knowledge for patients, health care professionals and key stakeholders, and to provide a framework for collaborative research. In 2016, to provide sustainability for this very important network, the SCPE Central Registry and European level coordination activities were transferred to the JRC and became part of the European Platform for Rare Diseases Registration. The SCPE Central Database is annually updated with new cases submitted by the SCPE Registries. In line with the mission of the JRC for providing evidence-based policy support, and in order to extend the use of the SCPE Central database to public health relevant outputs, the JRC-SCPE Central Registry launched the initiative of developing public health indicators. The public health indicators have been developed by based on collaboration between the JRC and the University Hospital of Toulouse. The input for the calculations of these indicators is based on data included in the standard SCPE dataset and collected annually by the registries in the JRC-SCPE Central Database. The current report describes the development of the JRC-SCPE Central Database after the transfer from the University of Grenoble, and the definition of a first set of key health indicators.JRC.F.1-Health in Societ

Troubles du comportement chez les enfants nés grands prématurés (étude épipage)

Cette étude a comparé la prévalence des troubles du comportement entre des enfants nés grands prématurés et des enfants nés à terme issus de l'étude de cohorte EPIPAGE et a recherché les facteurs associés à ces troubles. Les enfants étaient suivis depuis la naissance régulièrement par questionnaire postal et les troubles du comportement étaient évalués à trois ans et à cinq ans par le Strengths and Difficulties Questionnaire rempli par les parents. Les enfants grands prématurés ont globalement deux fois plus de risque à trois ans et à cinq ans que les enfants témoins d'avoir des troubles du comportement. Les troubles du comportement sont associés à l'état de santé, au développement psychomoteur et aux performances cognitives de l'enfant, aux conditions socio-économiques de la famille et à l'état de santé psychologique de la mère.TOULOUSE3-BU Santé-Centrale (315552105) / SudocPARIS-BIUM (751062103) / SudocSudocFranceF

Socioeconomic Disparities and Prevalence of Autism Spectrum Disorders and Intellectual Disability.

Study of the impact of socioeconomic status on autism spectrum disorders (ASD) and severe intellectual disabilities (ID) has yielded conflicting results. Recent European studies suggested that, unlike reports from the United States, low socioeconomic status is associated with an increased risk of ASD. For intellectual disabilities, the links with socioeconomic status vary according to the severity. We wished to clarify the links between socioeconomic status and the prevalence of ASD (with or without ID) and isolated severe ID.500 children with ASD and 245 children with severe ID (IQ <50) aged 8 years, born 1995 to 2004, were recruited from a French population-based registry. Inclusions were based on clinical diagnoses reported in medical records according to the International Classification of Diseases, 10th Revision. Socioeconomic status was measured by indicators available at block census level which characterize the population of the child's area of residence. Measures of deprivation, employment, occupation, education, immigration and family structure were used. Prevalences were compared between groups of census units defined by the tertiles of socioeconomic level in the general population.Prevalence of ASD with associated ID was higher in areas with the highest level of deprivation and the highest percentage of unemployed adults, persons with no diploma, immigrants and single-parent families. No association was found when using occupational class. Regarding ASD without associated ID, a higher prevalence was found in areas with the highest percentage of immigrants. No association was found for other socioeconomic indicators. The prevalence of isolated severe ID was likely to be higher in the most disadvantaged groups defined by all indicators.The prevalence of ASD with associated ID and of severe isolated ID is more likely to be higher in areas with the highest level of deprivation

Classification of events contributing to postneonatal cerebral palsy: Development, reliability, and recommendations for use

International audienceAim: 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

Prevalence risk ratios (and their 95% CI bars) of ASD and severe ID by the index of deprivation based on census block groups of residence divided into population quintiles (the first quintile being the least deprived and used as a baseline).

<p>Prevalence risk ratios (and their 95% CI bars) of ASD and severe ID by the index of deprivation based on census block groups of residence divided into population quintiles (the first quintile being the least deprived and used as a baseline).</p

Prevalence of ASD (with and without ID) and severe ID without associated ASD for 1,000 children aged 8 living in the surveillance area and born from 1995 to 2004.

<p>Prevalence of ASD (with and without ID) and severe ID without associated ASD for 1,000 children aged 8 living in the surveillance area and born from 1995 to 2004.</p

Prevalence Risk Ratio of ASD and Severe ID by Six Indicators based on Census Unit Data.

<p>^a n = number of cases in the census unit group defined by tertile of distribution of each indicator in the general population.</p><p>^b PRR = prevalence risk ratio.</p><p>Census units were divided into tertiles according to the distribution of each indicator, the first tertile being the least deprived and used as a baseline for the computing of risk ratios.</p

Prevalence (and 95% confidence interval) for 1,000 children aged 8 and born from 1995 to 2004, by six indicators based on census unit data.

<p>Census units were divided into tertiles of the 8-year-old population according to the distribution of each indicator in the general population. (A) Prevalence of all ASD (B) Prevalence of ASD without intellectual disability (IQ >70). (C) Prevalence of ASD with Intellectual Disability (IQ <70) (D) Prevalence of Severe Intellectual Disability (IQ <50) without ASD.</p

Cases Included in the Study and Prevalence of ASD (with and without ID) and Severe ID for 1,000 Eight-Year-Old Children Living in the Surveillance Area between 2003 and 2012.

<p>Denominator</p><p>^a = number of 8-year-old children living in the surveillance area between 2003 and 2012 (based on an estimation of the population with 2007 census data carried over to the 10 generations studied).</p><p>^b<i>p</i> = prevalence for 1,000 eight -year-old children living in the surveillance area.</p><p>^c 95% confidence interval.</p><p>Cases Included in the Study and Prevalence of ASD (with and without ID) and Severe ID for 1,000 Eight-Year-Old Children Living in the Surveillance Area between 2003 and 2012.</p

Trends in Prevalence and Severity of Pre/Perinatal Cerebral Palsy Among Children Born Preterm From 2004 to 2010: A SCPE Collaboration Study

Aim: To report on prevalence of cerebral palsy (CP), severity rates, and types of brain lesions in children born preterm 2004 to 2010 by gestational age groups. Methods: Data from 12 population-based registries of the Surveillance of Cerebral Palsy in Europe network were used. Children with CP were eligible if they were born preterm (<37 weeks of gestational age) between 2004 and 2010, and were at least 4 years at time of registration. Severity was assessed using the impairment index. The findings of postnatal brain imaging were classified according to the predominant pathogenic pattern. Prevalences were estimated per 1,000 live births with exact 95% confidence intervals within each stratum of gestational age: ≤27, 28–31, 32–36 weeks. Time trends of both overall prevalence and prevalence of severe CP were investigated using multilevel negative binomial regression models. Results: The sample comprised 2,273 children. 25.8% were born from multiple pregnancies. About 2-thirds had a bilateral spastic CP. 43.5% of children born ≤27 weeks had a high impairment index compared to 37.0 and 38.5% in the two other groups. Overall prevalence significantly decreased (incidence rate ratio per year: 0.96 [0.92–1.00[) in children born 32–36 weeks. We showed a decrease until 2009 for children born 28–31 weeks but an increase in 2010 again, and a steady prevalence (incidence rate ratio per year = 0.97 [0.92–1.02] for those born ≤27 weeks. The prevalence of the most severely affected children with CP revealed a similar but not significant trend to the overall prevalence in the corresponding GA groups. Predominant white matter injuries were more frequent in children born <32 weeks: 81.5% (≤27 weeks) and 86.4% (28–31 weeks), compared to 63.6% for children born 32–36 weeks. Conclusion: Prevalence of CP in preterm born children continues to decrease in Europe excepting the extremely immature children, with the most severely affected children showing a similar trend