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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
  1. Ann I Alriksson-Schmidt1,
  2. Matti Ahonen2,
  3. Guro L Andersen3,
  4. Guðbjörg Eggertsdóttir4,
  5. Taru Haula5,
  6. Reidun Jahnsen6,7,
  7. Johan Jarl8,
  8. Ira Jeglinsky-Kankainen9,
  9. Gudny Jonsdottir10,
  10. Abdu Kedir Seid11,
  11. Tinna L Ásgeirsdóttir12,
  12. Bjarne Møller-Madsen13,
  13. Kirsten Nordbye-Nielsen13,
  14. Sanjib Saha8,
  15. Darina Steskal14,
  16. Lauri Sääksvuori5,
  17. Gunnar Hägglund1
  1. 1 Orthopedics, Department of Clinical Sciences, Skåne University Hospital, Lund University, Lund, Sweden
  2. 2 Department of Pediatric Surgery, Helsinki Children’s Hospital, Helsinki University Central Hospital and University of Helsinki, Helsinki, Finland
  3. 3 The Cerebral Palsy Registry of Norway, Habilitation Center, Vestfold Hospital, Tønsberg, Norway
  4. 4 SLF’s Rehabilitation Center–Æfingastöðin, Reykjavík, Iceland
  5. 5 Centre for Health and Social Economics, National Institute for Health and Welfare, Helsinki, Finland
  6. 6 Cerebral Palsy Follow-up Program, Department of Neurosciences for Children, Oslo University Hospital, Oslo, Norway
  7. 7 Faculty of Medicine, Research Center of Habilitation and Rehabilitation Models and Services (CHARM), University of Oslo, Oslo, Norway
  8. 8 Health Economics Unit, Department of Clinical Science (Malmö), Lund University, Lund, Sweden
  9. 9 Department of Health and Welfare, Arcada University of Applied Sciences, Helsinki, Finland
  10. 10 Endurhaefing, Rehabilitation Centre of Excellence, Kopavogur, Iceland
  11. 11 Centre for Alcohol and Drug Research, Aarhus Universitet, Aarhus, Denmark
  12. 12 Faculty of Economics, University of Iceland, Reykjavik, Iceland
  13. 13 Department of Children's Orthopaedics, Aarhus Universitetshospital, Aarhus, Denmark
  14. 14 Uni Research Rokkan Centre, Bergen, Norway
  1. Correspondence to Dr Ann I Alriksson-Schmidt; ann.alriksson-schmidt{at}med.lu.se

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 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/

  • cerebral palsy
  • registers
  • quality of life
  • health economics
  • health
  • CP-North

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors AIAS, JJ and GH wrote the original protocol. All coauthors (MA, GLA, GE, TH, RJ, IJK, GJ, AKS, TLA, BMM, KNN, SS, DS, LS) have made substantial contributions to the conception and design. AIAS drafted the article. All other authors revised it critically for important intellectual content. All authors have given final approval of the version to be published.

  • Funding This work was supported by NordForsk (grant number 82866).

  • Disclaimer The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the funders. No other funding source supports this project.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval The project has approved ethics approvals: Sweden: Regional Ethics Board, Lund, dnr 2018/1000; Norway: Regional Committees for Medical and Health Research Ethics, dnr 2017/2457 REK sør-øst D; Finland: Helsinki University Hospital Ethical Committee IV (HUS dnr 3640/2017). The ethics review processes in Denmark differ for registry research and a waiver has been obtained. The approval from the Icelandic Bioethics Committee has been obtained.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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