About the project
The main objective is to significantly increase the knowledge of how persons with a highly complex and lifelong disability are affected at the individual, family, and societal level, by building a Nordic registry-based platform with a network of researchers from five of the Nordic countries, Specifically, we will investigate how living with CP affects the health, quality of life, healthcare utilization, education, labor market outcomes, socioeconomic status, and mortality throughout the lifespan of individuals with CP and his/her parents. We will also investigate if these effects differ between genders, within and across the Nordic countries.
Public Involvement
A service user panel consisting of patients and their carers has been established.
Cooperation
Multidisciplinary reearchers from Sweden, Denmark, Iceland and Finland.
Publications
- Hägglund G, Hollung SJ, Ahonen M, Andersen GL, Eggertsdóttir G, Gaston MS, Jahnsen R, Jeglinsky-Kankainen I, Nordbye-Nielsen K, Tresoldi I, Alriksson-Schmidt AI. Treatment of spasticity in children and adolescents with cerebral palsy in Northern Europe: a CP-North registry study. BMC Neurol. 2021 Jul 12;21(1):276. doi: 10.1186/s12883-021-02289-3.
- Store variasjoner i botulinum toxin A behandling til barn med cerebral parese I Norge. Tidsskrift for den norske legeforening, 28. juni 2018. Raftemo, AE, Mahendran A, Hollung SJ, Jahnsen R, Lydersen S, Vik T, Andersen G.
- Cerebral palsy in Moldova: subtypes, severity and associated impairments. BMC Pediatrics 2018 18:332 doi.org/10.1186/s12887-018-1305-6. Gincota EB, Andersen GL, Vik T, Jahnsen R.
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Enabling physical activity participation for children and youth with disabilities following a goal-directed, family-centred intervention. Research in Developmental Disabilities 2018 77; 30–39 doi.org/10.1016/j.ridd.2018.03.010. Willis C, Nyquist A, Jahnsen R, Elliott C, Ullenhag A.
- Is more frequent physical therapy associated with increased gross motor improvement in children with cerebral palsy? A national prospective cohort study, Disability and Rehabilitation 2018 doi.org/10.1080/09638288.2018.1528635. Størvold G, Jahnsen R, Evensen K-AI & Bratberg GH.
- Flaunting our assets. Making the most of the Nordic registry goldmine: Cerebral palsy as an example. Scandinavian Journal of Public Health 2019: 1–6. Alriksson-Schmidt AI, Jeglinsky-Kankainen IFD, Jahnsen RB, Hollung SJ, Andersen GL & Hägglund GV.
- The coolest I know – a qualitative study exploring the participation experiences of children with disabilities in an adapted physical activities program, Disability and Rehabilitation 2019. DOI:10.1080/09638288.2019.1573937. Nyquist A, Jahnsen RB, Moser T & Ullenhag A. (2019)
- Effect of a combined stretching and strength training program on gait function in children with cerebral palsy. A randomized controlled trial. Medicina, June 2019;55: 1-12. Fosdahl M.A, Jahnsen R, Kvalheim K., Holm I.
- Streching and progressive resistance exercise in children with cerebral palsy. A randomised controlled trial. Pediatric Physical Therapy, July 2019. Fosdahl M, Jahnsen R, Kvalheim K., Holm I.