Information processing in a network of cerebral palsy : data quality and analysis

Several European Cerebral Palsy (CP) registers formed a collaborativenetwork of Cerebral Palsy in order to harmonize their data and to establish acommon database. At the present time, the network gathers 24 CP registers,with 16 being active. The common database includes more than 14000 casesof children with CP, born between 1976 and 2002. Thanks to this largedatabase, the network can provide reliable estimates of prevalence rates ofchildren with CP, especially in the different CP subgroups (according togestational age or birthweight, neurological subtype).Our work was based on the SCPE common database. Firstly, we performeda survey on the data quality of the common database. Then we developednew tools to improve the quality of data. We provide now the registers witha feedback after the submission of their data and we wrote a data useguideline. We also conducted two studies to evaluate the reliability of theclassification of children with CP. The first study included pediatriciansseeing video-sequences of children with or without CP. The second studyincluded different professionals working in registers and who were given thewritten clinical description of the same children. The aim of these originalstudies was to evaluate whether the professionals classified a same child inthe same way concerning the diagnosis of CP, the neurological subtype andthe severity of gross and fine motor function. Results showed that interraterreliability was excellent for pediatricians seeing video-sequences andsubstantial for professionals reading the clinical description.Secondly, we worked on the analysis of data through two studies : theanalysis of the trend in prevalence rate of children with CP with abirthweight >2499g and born between 1980 and 1998 and the analysis of thetrend in prevalence rate of children with CP and epilepsy born between 1976and 1998. This work focused on the methods of trend analysis and on takinginto account the interaction between trend and register.

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Source https://theses.hal.science/tel-00770324
Author Sellier, Elodie
Maintainer CCSD
Last Updated May 15, 2026, 13:44 (UTC)
Created May 15, 2026, 13:44 (UTC)
Identifier NNT: 2012GRENS019
Language fr
Rights https://about.hal.science/hal-authorisation-v1/
contributor Techniques pour l'Evaluation et la Modélisation des Actions de la Santé (TIMC-IMAG-ThEMAS) ; Techniques de l'Ingénierie Médicale et de la Complexité - Informatique, Mathématiques et Applications, Grenoble - UMR 5525 (TIMC-IMAG) ; Université Joseph Fourier - Grenoble 1 (UJF)-Institut polytechnique de Grenoble - Grenoble Institute of Technology (Grenoble INP)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)-Université Joseph Fourier - Grenoble 1 (UJF)-Institut polytechnique de Grenoble - Grenoble Institute of Technology (Grenoble INP)-VetAgro Sup - Institut national d'enseignement supérieur et de recherche en alimentation, santé animale, sciences agronomiques et de l'environnement (VAS)-Centre National de la Recherche Scientifique (CNRS)
creator Sellier, Elodie
date 2012-06-18T00:00:00
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harvest_source_id 3374d638-d20b-4672-ba96-a23232d55657
harvest_source_title test moissonnage SELUNE
metadata_modified 2026-03-30T00:00:00
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