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

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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; Ahonen, Matti; Andersen, Guro L; Eggertsdóttir, Guðbjörg; Haula, Taru; Jahnsen, Reidun; Jarl, Johan; Jeglinsky-Kankainen, Ira; Jonsdottir, Gudny; Seid, Abdu Kedir; Ásgeirsdóttir, Tinna L; Møller-Madsen, Bjarne; Nordbye-Nielsen, Kirsten; Saha, Sanjib; Steskal, Darina; Sääksvuori, Lauri; Hägglund, Gunnar.

In: BMJ Open, Vol. 9, No. 10, e024438, 01.10.2019.

Research output: Contribution to journalArticle

Harvard

Alriksson-Schmidt, AI, Ahonen, M, Andersen, GL, Eggertsdóttir, G, Haula, T, Jahnsen, R, Jarl, J, Jeglinsky-Kankainen, I, Jonsdottir, G, Seid, AK, Ásgeirsdóttir, TL, Møller-Madsen, B, Nordbye-Nielsen, K, Saha, S, Steskal, D, Sääksvuori, L & Hägglund, G 2019, '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', BMJ Open, vol. 9, no. 10, e024438. https://doi.org/10.1136/bmjopen-2018-024438

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Alriksson-Schmidt AI, Ahonen M, Andersen GL, Eggertsdóttir G, Haula T, Jahnsen R, Jarl J, Jeglinsky-Kankainen I, Jonsdottir G, Seid AK, Ásgeirsdóttir TL, Møller-Madsen B, Nordbye-Nielsen K, Saha S, Steskal D, Sääksvuori L, Hägglund G. 2019. 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. BMJ Open. 9(10). https://doi.org/10.1136/bmjopen-2018-024438

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Alriksson-Schmidt, Ann I ; Ahonen, Matti ; Andersen, Guro L ; Eggertsdóttir, Guðbjörg ; Haula, Taru ; Jahnsen, Reidun ; Jarl, Johan ; Jeglinsky-Kankainen, Ira ; Jonsdottir, Gudny ; Seid, Abdu Kedir ; Ásgeirsdóttir, Tinna L ; Møller-Madsen, Bjarne ; Nordbye-Nielsen, Kirsten ; Saha, Sanjib ; Steskal, Darina ; Sääksvuori, Lauri ; Hägglund, Gunnar. / 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. In: BMJ Open. 2019 ; Vol. 9, No. 10.

RIS

TY - JOUR

T1 - CP-North: living life in the Nordic countries?

T2 - A retrospective register research protocol on individuals with cerebral palsy and their parents living in Sweden, Norway, Denmark, Finland and Iceland

AU - Alriksson-Schmidt, Ann I

AU - Ahonen, Matti

AU - Andersen, Guro L

AU - Eggertsdóttir, Guðbjörg

AU - Haula, Taru

AU - Jahnsen, Reidun

AU - Jarl, Johan

AU - Jeglinsky-Kankainen, Ira

AU - Jonsdottir, Gudny

AU - Seid, Abdu Kedir

AU - Ásgeirsdóttir, Tinna L

AU - Møller-Madsen, Bjarne

AU - Nordbye-Nielsen, Kirsten

AU - Saha, Sanjib

AU - Steskal, Darina

AU - Sääksvuori, Lauri

AU - Hägglund, Gunnar

N1 - © 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.

PY - 2019/10/1

Y1 - 2019/10/1

N2 - 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/.

AB - 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/.

U2 - 10.1136/bmjopen-2018-024438

DO - 10.1136/bmjopen-2018-024438

M3 - Article

VL - 9

JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

IS - 10

M1 - e024438

ER -