The impact of longitudinal surveillance of individuals with cerebral palsy in Norway; a 20-year quality registry and follow-up program perspective

Authors

  • Sandra Julsen Hollung Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Vestfold Hospital Trust, Tønsberg, Norway, Department of Clinical and Molecular Medicine, Norwegian University of Science and Technology, Trondheim, Norway
  • Reidun Jahnsen Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Oslo University Hospital, Oslo, Norway, Research Centre of Habilitation and Rehabilitation Models and Services, Institute of Health and Society, University of Oslo, Oslo, Norway
  • Gunvor Lilleholt Klevberg Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Oslo University Hospital, Oslo, Norway
  • Nina Kløve Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Oslo University Hospital, Oslo, Norway
  • Guro L. Andersen Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP), Vestfold Hospital Trust, Tønsberg, Norway, Department of Clinical and Molecular Medicine, Norwegian University of Science and Technology, Trondheim, Norway

DOI:

https://doi.org/10.5324/nje.v31i1-2.5606

Abstract

ABSTRACT
The Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) has systematically collected
data on individuals with cerebral palsy (CP) and been a driver of knowledge dissemination for over 20 years.
NorCP data have increased the competence of health professionals in both the municipal and specialist
healthcare services through publication of multiple scientific articles ranging from risk factors for CP to
lifelong interventions, quality improvement projects, and training services. This has led to a streamlined
process in the diagnosis and follow-up of children and youths with CP in Norway to ensure that they receive
"the right treatment at the right time," regardless of where they live using evidence-based interventions based
on needs that are revealed in the registrations.
NORSK SAMMENDRAG
Norsk kvalitets- og oppfølgingsregister for cerebral parese (NorCP) har systematisk samlet inn data om
personer med cerebral parese og vært en pådriver for kunnskapsformidling i over 20 år. NorCP data har økt
kompetansen til helsepersonell i både kommune- og spesialisthelsetjenesten gjennom publisering av flere
vitenskapelige artikler om risikofaktorer for CP til livslange intervensjoner, kvalitetsforbedringsprosjekter
samt kurs og kompetansetjenester. Dette har ført til økt kvalitet på diagnostisering og oppfølging av barn og
unge med CP i Norge, som sikrer at de får «riktig behandling til rett tid», uansett hvor de bor i landet med
bruk av evidensbaserte intervensjoner basert på behov som avdekkes ved registreringene.

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Published

2023-10-20

How to Cite

Hollung, S. J. ., Jahnsen, R. ., Klevberg, G. L. ., Kløve , N. ., & Andersen, G. L. . (2023). The impact of longitudinal surveillance of individuals with cerebral palsy in Norway; a 20-year quality registry and follow-up program perspective. Norsk Epidemiologi, 31(1-2). https://doi.org/10.5324/nje.v31i1-2.5606