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The Danish Cerebral Palsy Registry. A registry on a specific impairment
P Uldall1, S I Michelsen, M Topp
1Cerebral Palsy Registry, National Institute of Public Health, Svanemøllevej 25, DK-2100 Copenhagen. pu@rh.dk
Insights
The Danish Cerebral Palsy Registry tracks childhood cerebral palsy (CP) cases since 1925. Research shows changes in CP prevalence linked to preterm infant survival and mechanical ventilation use.
Area of Science:
- Pediatrics
- Neurology
- Public Health
Background:
- Cerebral palsy (CP) is the most common childhood disability, affecting 2-3 per 1000 live births.
- The Danish Cerebral Palsy Registry has collected data since 1925, enabling long-term prevalence studies.
Purpose of the Study:
- To analyze trends in cerebral palsy birth prevalence.
- To correlate prevalence changes with pre- and perinatal factors.
- To explore international CP prevalence differences and social consequences.
Main Methods:
- Utilizing data from the Danish Cerebral Palsy Registry, established in 1925.
- Registering information on pregnancy, birth, neonatal period, impairments, and demographics.
- Analyzing birth prevalence trends and correlating them with pre- and perinatal conditions.
Main Results:
- Previously found a correlation between increased preterm infant survival and higher CP prevalence.
- Observed a decreased prevalence in very preterm infants associated with reduced mechanical ventilation.
- Ongoing studies investigate CP and maternal infection, and international prevalence variations.
Conclusions:
- The Danish Cerebral Palsy Registry offers significant research potential for understanding CP trends.
- Pre- and perinatal factors, including medical interventions, influence CP prevalence.
- Future research aims to elucidate international differences and the societal impact of CP.
Abstract:
Cerebral palsy (CP) is the commonest disabling impairment in childhood, with a prevalence of 2-3 per 1000 live births. The Danish Cerebral Palsy Registry is a research registry that contains cases of CP from birth year 1925 and has estimated the birth prevalence since 1950. Data on children with CP are collected from paediatric departments and one special institution for disabled children. The children are included by a child neurologist and an obstetrician, and information on pregnancy, birth, neonatal period, impairments and demographic data on the child and mother are registered in a standard form. The uptake area is eastern Denmark, covering about 50% of the population, but the rest of Denmark is planned to be included from 2001. The Registry is large, well established and validated, and the definitions and collection procedures have not changed through several decades. It therefore has great research potential. Birth prevalence is estimated continuously, and changes over time are analysed and correlated with pre- and perinatal conditions. A correlation between increased survival of preterm babies and an increased prevalence was found previously, and a decreased prevalence in very preterm infants was later associated with less use of mechanical ventilation. A study correlating CP and maternal infection is ongoing. Collaboration between 14 European CP registries allows the true differences in prevalence between different countries to be studied. Linkage to other individually based registries in Denmark will allow the social consequences of CP to be described.