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

Abstract

The Norwegian Quality and Surveillance Registry for Cerebral Palsy (NorCP) has systematically collecteddata 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 specialisthealthcare services through publication of multiple scientific articles ranging from risk factors for CP tolifelong interventions, quality improvement projects, and training services. This has led to a streamlinedprocess 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 basedon needs that are revealed in the registrations.NORSK SAMMENDRAGNorsk kvalitets- og oppfølgingsregister for cerebral parese (NorCP) har systematisk samlet inn data ompersoner med cerebral parese og vært en pådriver for kunnskapsformidling i over 20 år. NorCP data har øktkompetansen til helsepersonell i både kommune- og spesialisthelsetjenesten gjennom publisering av flerevitenskapelige artikler om risikofaktorer for CP til livslange intervensjoner, kvalitetsforbedringsprosjektersamt kurs og kompetansetjenester. Dette har ført til økt kvalitet på diagnostisering og oppfølging av barn ogunge med CP i Norge, som sikrer at de får «riktig behandling til rett tid», uansett hvor de bor i landet medbruk av evidensbaserte intervensjoner basert på behov som avdekkes ved registreringene.

Radiological assessment of hip disease in children with cerebral palsy: development of a core measurement set

“… 6 National hip surveillance programmes have been implemented in many countries to detect hip displacement earlier and to enable timely intervention. 7 - 12 Several studies have reported a significant decrease in the incidence of hip dislocation in regions where a hip surveillance programme has been introduced. 6 , 11 , 13 …”

“…6 National hip surveillance programmes have been implemented in many countries to detect hip displacement earlier and to enable timely intervention. [7][8][9][10][11][12] Several studies have reported a significant decrease in the incidence of hip dislocation in regions where a hip surveillance programme has been introduced. 6,11,13 Currently, radiological hip analysis in surveillance programmes, such as the Cerebral Palsy Integrated Pathway Scotland (CPIPS), is performed manually by experts.…”