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  • Alriksson-Schmidt, Ann ILund University,Lunds universitet,CPUP - barnortopedisk forskningsgrupp,Forskargrupper vid Lunds universitet,CPUP - Children's Orthopedics Group,Lund University Research Groups,Skåne University Hospital (author)

CP-North: living life in the Nordic countries? : A retrospective register research protocol on individuals with cerebral palsy and their parents living in Sweden, Norway, Denmark, Finland and Iceland

  • Article/chapterEnglish2019

Publisher, publication year, extent ...

  • 2019-10-01
  • BMJ,2019

Numbers

  • LIBRIS-ID:oai:lup.lub.lu.se:b41ceb1d-1bf4-493d-9ca6-d10447971231
  • https://lup.lub.lu.se/record/b41ceb1d-1bf4-493d-9ca6-d10447971231URI
  • https://doi.org/10.1136/bmjopen-2018-024438DOI

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  • Language:English
  • Summary in:English

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  • Subject category:art swepub-publicationtype
  • Subject category:ref swepub-contenttype

Notes

  • INTRODUCTION: Cerebral palsy (CP) is one of the most common neurodevelopmental disabilities. Yet, most individuals with CP are adults. How individuals with CP fare in terms of health, quality of life (QoL), education, employment and income is largely unknown. Further, little is known about the effects of having a child with CP on the parents. The Nordic countries are known for their strong welfare systems, yet it is unknown to what extent the added burden related to disability is actually compensated for. We will explore how living with CP affects health, QoL, healthcare utilisation, education, labour market outcomes, socioeconomic status and mortality throughout the lifespan of individuals with CP and their parents. We will also investigate if these effects differ between subgroups, within and across the Nordic countries. METHODS AND ANALYSES: CP-North is a multidisciplinary 4-year (1 August 2017 to 31 July 2021) register research project. The research consortium comprises researchers and users from Sweden, Norway, Denmark, Iceland and Finland. Data from CP registries and follow-up programmes, or cohorts of individuals with CP, will be merged with general national registries. All individual studies are structured under three themes: medical outcomes, social and public health outcomes, and health economics. Both case-control and cohort designs will be included depending on the particular research question. Data will be analysed in the individual countries and later merged across nations.ETHICS AND DISSEMINATION: The ethics approval processes in each individual country are followed. Findings will be published (open access) in international peer-reviewed journals in related fields. Updates on CP-North will be published online at http://rdi.arcada.fi/cpnorth/en/.

Subject headings and genre

Added entries (persons, corporate bodies, meetings, titles ...)

  • Ahonen, MattiHelsinki University Central Hospital,University of Helsinki (author)
  • Andersen, Guro LVestfold Hospital (author)
  • Eggertsdóttir, GuðbjörgSLF's Rehabilitation Center-Æfingastöðin (author)
  • Haula, TaruFinnish National Institute for Health and Welfare (author)
  • Jahnsen, ReidunUniversity of Oslo,Oslo university hospital (author)
  • Jarl, JohanLund University,Lunds universitet,Hälsoekonomi,Forskargrupper vid Lunds universitet,Health Economics,Lund University Research Groups(Swepub:lu)smim-jja (author)
  • Jeglinsky-Kankainen, IraArcada University of Applied Sciences (author)
  • Jonsdottir, GudnyEndurhaefing þekkingarsetur , Kópavogur (author)
  • Seid, Abdu KedirAarhus University (author)
  • Ásgeirsdóttir, Tinna LUniversity of Iceland (author)
  • Møller-Madsen, BjarneAarhus University Hospital (author)
  • Nordbye-Nielsen, KirstenAarhus University Hospital (author)
  • Saha, SanjibLund University,Lunds universitet,Hälsoekonomi,Forskargrupper vid Lunds universitet,Health Economics,Lund University Research Groups(Swepub:lu)med-sis (author)
  • Steskal, DarinaUni Research AS (author)
  • Sääksvuori, LauriFinnish National Institute for Health and Welfare (author)
  • Hägglund, GunnarLund University,Lunds universitet,CPUP - barnortopedisk forskningsgrupp,Forskargrupper vid Lunds universitet,CPUP - Children's Orthopedics Group,Lund University Research Groups,Skåne University Hospital(Swepub:lu)ort-gha (author)
  • CPUP - barnortopedisk forskningsgruppForskargrupper vid Lunds universitet (creator_code:org_t)

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  • In:BMJ Open: BMJ9:102044-6055

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