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Flaunting our assets. Making the most of the Nordic registry goldmine : Cerebral palsy as an example

Alriksson-Schmidt, Ann I. LU ; Jeglinsky-Kankainen, Ira F.D.; Jahnsen, Reidun B.; Hollung, Sandra J.; Andersen, Guro L. and HÄgglund, Gunnar V. LU (2019) In Scandinavian Journal of Public Health
Abstract

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... (More)

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.

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author
organization
publishing date
type
Contribution to journal
publication status
epub
subject
keywords
cerebral palsy, national quality registries, public health, Registry
in
Scandinavian Journal of Public Health
publisher
Taylor & Francis
external identifiers
  • scopus:85062464764
ISSN
1403-4948
DOI
10.1177/1403494819829338
language
English
LU publication?
yes
id
4aa66496-980b-4541-8848-0dc6b95181f0
date added to LUP
2019-03-14 13:41:25
date last changed
2019-03-14 13:41:25
@article{4aa66496-980b-4541-8848-0dc6b95181f0,
  abstract     = {<p>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.</p>},
  author       = {Alriksson-Schmidt, Ann I. and Jeglinsky-Kankainen, Ira F.D. and Jahnsen, Reidun B. and Hollung, Sandra J. and Andersen, Guro L. and HÄgglund, Gunnar V.},
  issn         = {1403-4948},
  keyword      = {cerebral palsy,national quality registries,public health,Registry},
  language     = {eng},
  month        = {02},
  publisher    = {Taylor & Francis},
  series       = {Scandinavian Journal of Public Health},
  title        = {Flaunting our assets. Making the most of the Nordic registry goldmine : Cerebral palsy as an example},
  url          = {http://dx.doi.org/10.1177/1403494819829338},
  year         = {2019},
}