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
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 effect...
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BMJ Publishing Group
2019-10-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/9/10/e024438.full |
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| author | Ann I Alriksson-Schmidt Matti Ahonen Guro L Andersen Guðbjörg Eggertsdóttir Taru Haula Reidun Jahnsen Johan Jarl Ira Jeglinsky-Kankainen Gudny Jonsdottir Abdu Kedir Seid Tinna L Ásgeirsdóttir Bjarne Møller-Madsen Kirsten Nordbye-Nielsen Sanjib Saha Darina Steskal Lauri Sääksvuori Gunnar Hägglund |
| author_facet | Ann I Alriksson-Schmidt Matti Ahonen Guro L Andersen Guðbjörg Eggertsdóttir Taru Haula Reidun Jahnsen Johan Jarl Ira Jeglinsky-Kankainen Gudny Jonsdottir Abdu Kedir Seid Tinna L Ásgeirsdóttir Bjarne Møller-Madsen Kirsten Nordbye-Nielsen Sanjib Saha Darina Steskal Lauri Sääksvuori Gunnar Hägglund |
| author_sort | Ann I Alriksson-Schmidt |
| collection | DOAJ |
| description | 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/ |
| format | Article |
| id | doaj-art-30c9dc06d9a24ac5a6658e774f5ea3fc |
| institution | OA Journals |
| issn | 2044-6055 |
| language | English |
| publishDate | 2019-10-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj-art-30c9dc06d9a24ac5a6658e774f5ea3fc2025-08-20T02:38:42ZengBMJ Publishing GroupBMJ Open2044-60552019-10-0191010.1136/bmjopen-2018-024438CP-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 IcelandAnn I Alriksson-Schmidt0Matti Ahonen1Guro L Andersen2Guðbjörg Eggertsdóttir3Taru Haula4Reidun Jahnsen5Johan Jarl6Ira Jeglinsky-Kankainen7Gudny Jonsdottir8Abdu Kedir Seid9Tinna L Ásgeirsdóttir10Bjarne Møller-Madsen11Kirsten Nordbye-Nielsen12Sanjib Saha13Darina Steskal14Lauri Sääksvuori15Gunnar Hägglund161 Orthopedics, Department of Clinical Sciences, Skåne University Hospital, Lund University, Lund, SwedenDepartment of Pediatric Orthopedics and Traumatology, Helsinki Children’s Hospital, Helsinki University Hospital and University of Helsinki, Helsinki, Finland2 Department of Clinical and Molecular Medicine, Norwegian University of Science and Technology, Trondheim, Norway4 SLF’s Rehabilitation Center–Æfingastöðin, Reykjavík, Iceland5 Centre for Health and Social Economics, National Institute for Health and Welfare, Helsinki, Finland6 Cerebral Palsy Follow-up Program, Department of Neurosciences for Children, Oslo University Hospital, Oslo, Norway8 Health Economics Unit, Department of Clinical Science (Malmö), Lund University, Lund, Sweden9 Department of Health and Welfare, Arcada University of Applied Sciences, Helsinki, Finland10 Endurhaefing, Rehabilitation Centre of Excellence, Kopavogur, Iceland11 Centre for Alcohol and Drug Research, Aarhus Universitet, Aarhus, Denmark12 Faculty of Economics, University of Iceland, Reykjavik, Iceland13 Department of Children`s Orthopaedics, Aarhus Universitetshospital, Aarhus, Denmark13 Department of Children`s Orthopaedics, Aarhus Universitetshospital, Aarhus, Denmark8 Health Economics Unit, Department of Clinical Science (Malmö), Lund University, Lund, Sweden14 Uni Research Rokkan Centre, Bergen, Norway5 Centre for Health and Social Economics, National Institute for Health and Welfare, Helsinki, Finland1 Orthopedics, Department of Clinical Sciences, Skåne University Hospital, Lund University, Lund, SwedenIntroduction 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/https://bmjopen.bmj.com/content/9/10/e024438.full |
| spellingShingle | Ann I Alriksson-Schmidt Matti Ahonen Guro L Andersen Guðbjörg Eggertsdóttir Taru Haula Reidun Jahnsen Johan Jarl Ira Jeglinsky-Kankainen Gudny Jonsdottir Abdu Kedir Seid Tinna L Ásgeirsdóttir Bjarne Møller-Madsen Kirsten Nordbye-Nielsen Sanjib Saha Darina Steskal Lauri Sääksvuori Gunnar Hägglund 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 |
| 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 |
| title_full | 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 |
| title_fullStr | 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 |
| title_full_unstemmed | 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 |
| title_short | 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 |
| title_sort | 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 | https://bmjopen.bmj.com/content/9/10/e024438.full |
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