Flaunting our assets. Making the most of the Nordic registry goldmine: Cerebral palsy as an example

Scandinavian Journal of Public Health
Ann I Alriksson-SchmidtGunnar Hägglund

Abstract

Aims:To describe the early experiences of a Nordic multidisciplinary cerebral palsy (CP) registry research program combining data from national medical quality registries, follow-up programs and cohort data, in addition to data from other national registries; to explore the scientific and practical uses of such research, and provide recommendations for facilitating similar work in the future. Methods: The work was divided into three themes: medical outcomes, social and public health outcomes, and health economics; and three cross-cutting teams: a reference team, a challenge team, and a communication and dissemination team. Initially each country will perform domestic research, and in the second stage data will be merged across all Nordic countries. Data from national registries with vital statistics, education and work, social benefits, and healthcare will be used. Comparisons will be matched for both the individuals with CP and their parents. Results: Initial work has been done on agreeing which variables to request from the respective agencies and planning the correct procedures and steps required to acquire the data. As of 2018, Sweden, Norway, and Finland have received approved ethics board applications. Iceland and Denmark...Continue Reading

References

Sep 1, 1986·Journal of Pediatric Orthopedics·J E Lonstein, K Beck
Mar 8, 2011·International Journal of Epidemiology·Reija Paananen, Mika Gissler
Apr 6, 2016·Disability and Rehabilitation·Ann I Alriksson-SchmidtGunnar Hägglund
Jan 24, 2017·Disability and Rehabilitation·James AndersonUNKNOWN Research Family Engagement Committee
Mar 15, 2018·Acta Orthopaedica·Gunnar HägglundElisabet Rodby-Bousquet
Apr 19, 2018·Developmental Medicine and Child Neurology·Susan M ReidDinah S Reddihough
May 22, 2018·European Journal of Paediatric Neurology : EJPN : Official Journal of the European Paediatric Neurology Society·Sandra Julsen HollungGuro L Andersen
Jul 10, 2018·Research in Developmental Disabilities·Utsana TonmukayakulRob Carter

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Citations

Apr 28, 2020·Developmental Medicine and Child Neurology·Ingeborg ForthunMette C Tollånes
Jan 6, 2021·Developmental Medicine and Child Neurology·Sandra Julsen HollungGuro L Andersen
Aug 12, 2021·BMJ Open·Jhangir HumayunHanna Gyllensten

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Software Mentioned

NordMAN
CPNorth
CPUP

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