Ann I Alriksson-Schmidt1, Ira F D Jeglinsky-Kankainen2, Reidun B Jahnsen3,4, Sandra J Hollung5,6, Guro L Andersen5,6, Gunnar V HÄgglund1. 1. Lund University, Skane University Hospital, Department of Clinical Sciences Lund, Orthopedics, Lund, Sweden. 2. Arcada University of Applied Sciences, Helsinki, Finland. 3. Oslo University Hospital, Cerebral Palsy Follow-up Program, Department of Neurosciences for Children, Oslo, Norway. 4. University of Oslo, Faculty of Medicine, Research Center of Habilitation and Rehabilitation Models and Services (CHARM), Oslo, Norway. 5. Cerebral Palsy Registry of Norway, Vestfold Hospital Trust, Tønsberg, Norway. 6. Norwegian University of Science and Technology, Faculty of Medicine and Health Sciences, Department of Clinical and Molecular Medicine, Trondheim, Norway.
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 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.
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.
Entities:
Keywords:
Registry; cerebral palsy; national quality registries; public health
Authors: Line Tang Møllehave; Marie Holm Eliasen; Ieva Strēle; Allan Linneberg; Rodrigo Moreno-Reyes; Ludmila B Ivanova; Zvonko Kusić; Iris Erlund; Till Ittermann; Endre V Nagy; Ingibjorg Gunnarsdottir; Jonathan Eli Arbelle; Aaron Milton Troen; Valdis Pīrāgs; Lisbeth Dahl; Alicja Hubalewska-Dydejczyk; Malgorzata Trofimiuk-Müldner; João Jacome de Castro; Mafalda Marcelino; Simona Gaberšček; Katja Zaltel; Manuel Puig-Domingo; Lluis Vila; Sofia Manousou; Helena Filipsson Nyström; Michael Bruce Zimmermann; Karen R Mullan; Jayne Valerie Woodside; Henry Völzke; Betina Heinsbæk Thuesen Journal: Endocr Connect Date: 2022-03-10 Impact factor: 3.335