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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.
Afiliación
  • Alriksson-Schmidt AI; Orthopedics, Department of Clinical Sciences, Skåne University Hospital, Lund University, Lund, Sweden ann.alriksson-schmidt@med.lu.se.
  • Ahonen M; Department of Pediatric Surgery, Helsinki Children's Hospital, Helsinki University Central Hospital and University of Helsinki, Helsinki, Finland.
  • Andersen GL; The Cerebral Palsy Registry of Norway, Habilitation Center, Vestfold Hospital, Tønsberg, Norway.
  • Eggertsdóttir G; SLF's Rehabilitation Center-Æfingastöðin, Reykjavík, Iceland.
  • Haula T; Centre for Health and Social Economics, National Institute for Health and Welfare, Helsinki, Finland.
  • Jahnsen R; Cerebral Palsy Follow-up Program, Department of Neurosciences for Children, Oslo University Hospital, Oslo, Norway.
  • Jarl J; Faculty of Medicine, Research Center of Habilitation and Rehabilitation Models and Services (CHARM), University of Oslo, Oslo, Norway.
  • Jeglinsky-Kankainen I; Health Economics Unit, Department of Clinical Science (Malmö), Lund University, Lund, Sweden.
  • Jonsdottir G; Department of Health and Welfare, Arcada University of Applied Sciences, Helsinki, Finland.
  • Seid AK; Endurhaefing, Rehabilitation Centre of Excellence, Kopavogur, Iceland.
  • Ásgeirsdóttir TL; Centre for Alcohol and Drug Research, Aarhus Universitet, Aarhus, Denmark.
  • Møller-Madsen B; Faculty of Economics, University of Iceland, Reykjavik, Iceland.
  • Nordbye-Nielsen K; Department of Children's Orthopaedics, Aarhus Universitetshospital, Aarhus, Denmark.
  • Saha S; Department of Children's Orthopaedics, Aarhus Universitetshospital, Aarhus, Denmark.
  • Steskal D; Health Economics Unit, Department of Clinical Science (Malmö), Lund University, Lund, Sweden.
  • Sääksvuori L; Uni Research Rokkan Centre, Bergen, Norway.
  • Hägglund G; Centre for Health and Social Economics, National Institute for Health and Welfare, Helsinki, Finland.
BMJ Open ; 9(10): e024438, 2019 10 01.
Article en En | MEDLINE | ID: mdl-31575533
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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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Calidad de Vida / Parálisis Cerebral / Costo de Enfermedad Tipo de estudio: Etiology_studies / Guideline / Observational_studies / Prevalence_studies / Risk_factors_studies Aspecto: Ethics / Patient_preference Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male / Newborn País/Región como asunto: Europa Idioma: En Revista: BMJ Open Año: 2019 Tipo del documento: Article País de afiliación: Suecia Pais de publicación: Reino Unido
Texto completo
Añadir a Mi BVS
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XML
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Asunto principal: Padres / Calidad de Vida / Parálisis Cerebral / Costo de Enfermedad Tipo de estudio: Etiology_studies / Guideline / Observational_studies / Prevalence_studies / Risk_factors_studies Aspecto: Ethics / Patient_preference Límite: Adolescent / Adult / Child / Child, preschool / Female / Humans / Infant / Male / Newborn País/Región como asunto: Europa Idioma: En Revista: BMJ Open Año: 2019 Tipo del documento: Article País de afiliación: Suecia Pais de publicación: Reino Unido