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Slovenska pediatrija 2014; 21: 23-28

https://doi.org/

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Review article

THE NEW CEREBRAL PALSY REGISTER

A. Radšel
Klinični oddelek za otroško, mladostniško in razvojno nevrologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

M. Jekovec Vrhovšek
Klinični oddelek za otroško, mladostniško in razvojno nevrologijo, Pediatrična klinika, Univerzitetni klinični center Ljubljana, Ljubljana, Slovenija

Abstract

Background: Slovene national CP register (SRCP) is a part of much bigger European surveillance system and was first established in 2010 and upgraded to electronic version in 2011. Materials and methods: 371 children, born between 1998 and 2009, are currently registered in SRCP. Their data were collected mostly through questionnaires filled by neurodevelopmental pediatricians. Results: Most children (90.6%) have spastic form of CP. Considering Gross Motor Function Classification System 40.2% of children fall in the mildest form of CP (stage I), the most severe form (stage V) is present in 17 %. More than half of children (55.5 %) have at least one pregnancy risk factor. One third of patients (33.5%) has concurrent epilepsy, two thirds (65.7%) have another disorder (affected speech, behavior, eyesight, hearing...). Cognitive functions are normal (IQ > 70) in half of patients. Almost all patients (98.4%) are included in neurodevelopmental treatment and follow up. Conclusions: SRCP gave us a good insight into the group of Slovene children with CP. Our experience proved electronic registration to be simple, safe, reliable and dynamic and has multiple advantages over classical paper registers.

Key words: register, electronic data base, cerebral palsy, epilepsy.