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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

Alriksson-Schmidt, Ann I LU ; Ahonen, Matti ; Andersen, Guro L ; Eggertsdóttir, Guðbjörg ; Haula, Taru ; Jahnsen, Reidun ; Jarl, Johan LU orcid ; Jeglinsky-Kankainen, Ira ; Jonsdottir, Gudny and Seid, Abdu Kedir , et al. (2019) In BMJ Open 9(10).
Abstract

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... (More)

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/.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
in
BMJ Open
volume
9
issue
10
article number
e024438
publisher
BMJ Publishing Group
external identifiers
  • pmid:31575533
  • scopus:85072848260
ISSN
2044-6055
DOI
10.1136/bmjopen-2018-024438
language
English
LU publication?
yes
additional info
© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.
id
b41ceb1d-1bf4-493d-9ca6-d10447971231
date added to LUP
2019-10-16 07:30:20
date last changed
2024-06-26 04:19:28
@article{b41ceb1d-1bf4-493d-9ca6-d10447971231,
  abstract     = {{<p>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.</p><p>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/.</p>}},
  author       = {{Alriksson-Schmidt, Ann I and Ahonen, Matti and Andersen, Guro L and Eggertsdóttir, Guðbjörg and Haula, Taru and Jahnsen, Reidun and Jarl, Johan and Jeglinsky-Kankainen, Ira and Jonsdottir, Gudny and Seid, Abdu Kedir and Ásgeirsdóttir, Tinna L and Møller-Madsen, Bjarne and Nordbye-Nielsen, Kirsten and Saha, Sanjib and Steskal, Darina and Sääksvuori, Lauri and Hägglund, Gunnar}},
  issn         = {{2044-6055}},
  language     = {{eng}},
  month        = {{10}},
  number       = {{10}},
  publisher    = {{BMJ Publishing Group}},
  series       = {{BMJ Open}},
  title        = {{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}},
  url          = {{http://dx.doi.org/10.1136/bmjopen-2018-024438}},
  doi          = {{10.1136/bmjopen-2018-024438}},
  volume       = {{9}},
  year         = {{2019}},
}