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Flaunting our asset...
Flaunting our assets. Making the most of the Nordic registry goldmine : Cerebral palsy as an example
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- Alriksson-Schmidt, Ann I. (författare)
- Lund University,Lunds universitet,CPUP - barnortopedisk forskningsgrupp,Forskargrupper vid Lunds universitet,CPUP - Children's Orthopedics Group,Lund University Research Groups,Skåne University Hospital
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- Jeglinsky-Kankainen, Ira F.D. (författare)
- Arcada University of Applied Sciences
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- Jahnsen, Reidun B. (författare)
- Oslo university hospital,University of Oslo
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- Hollung, Sandra J. (författare)
- Vestfold Hospital,Norwegian University of Science and Technology
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- Andersen, Guro L. (författare)
- Norwegian University of Science and Technology,Vestfold Hospital
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- HÄgglund, Gunnar V. (författare)
- Lund University,Lunds universitet,CPUP - barnortopedisk forskningsgrupp,Forskargrupper vid Lunds universitet,CPUP - Children's Orthopedics Group,Lund University Research Groups,Skåne University Hospital
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(creator_code:org_t)
- 2019-02-28
- 2020
- Engelska 6 s.
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Ingår i: Scandinavian Journal of Public Health. - : SAGE Publications. - 1403-4948 .- 1651-1905. ; 48:1, s. 113-118
- Relaterad länk:
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http://dx.doi.org/10...
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https://lup.lub.lu.s...
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https://doi.org/10.1...
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Abstract
Ämnesord
Stäng
- Aims:To describe the early experiences of a Nordic multidisciplinary cerebral palsy (CP) registry research program combining data from national medical quality registries, follow-up programs and cohort data, in addition to data from other national registries; to explore the scientific and practical uses of such research, and provide recommendations for facilitating similar work in the future. Methods: The work was divided into three themes: medical outcomes, social and public health outcomes, and health economics; and three cross-cutting teams: a reference team, a challenge team, and a communication and dissemination team. Initially each country will perform domestic research, and in the second stage data will be merged across all Nordic countries. Data from national registries with vital statistics, education and work, social benefits, and healthcare will be used. Comparisons will be matched for both the individuals with CP and their parents. Results: Initial work has been done on agreeing which variables to request from the respective agencies and planning the correct procedures and steps required to acquire the data. As of 2018, Sweden, Norway, and Finland have received approved ethics board applications. Iceland and Denmark are waiting for their approvals. A webpage and a platform for internal communication have been created. Conclusions: Nordic register research has great potential. Linking national CP quality registries and follow-up programs with other large national registries holds particular promise because problems identified through research can be applied at a population level. It is imperative that ethical clearance and data delivery processes are streamlined and transparent, and that data variables are measured the same way in the different countries.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Hälsovetenskap -- Folkhälsovetenskap, global hälsa, socialmedicin och epidemiologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Health Sciences -- Public Health, Global Health, Social Medicine and Epidemiology (hsv//eng)
Nyckelord
- cerebral palsy
- national quality registries
- public health
- Registry
Publikations- och innehållstyp
- art (ämneskategori)
- ref (ämneskategori)
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