Contributions
Abstract: P348
Type: Poster
Abstract Category: Clinical aspects of MS - Clinical assessment tools
Background: The incidence and prevalence of MS in Finland are high and the structure of the Finnish health care system with publicly funded health care program is ideal for data basing of health administrative data. However, Finland has been the only Scandinavian country without a national MS register. To meet this need, Finnish Neurological Association assigned a steering board to develop an MS-registry in Finland in January 2011.
Methods: A registry software was developed with a private company, StellarQ. Each hospital joining the registry makes a contract with StellarQ and forms a closed registry of their own. National register data is obtained by combining anonymized data from each closed hospital registry.
Results: By April 2016 all 5 university hospitals and 6 central hospitals have joined the register. An initially internet based registry software service has been integrated into the electronic patients files during 2016 in most participating hospitals. Date of birth, gender and date of MS diagnosis (ICD-code G35) have been registered from altogether 6304 MS patients and 548 patients with a clinically isolated syndrome, CIS (ICD-code G37.9). A total of 71 % of the MS patients and 64 of CIS patients are female. Complete retrospective data sets of EDSS evolution, relapses, corticosteroid pulses and medication side effects and reasons for medications discontinuations are presented from approximately 400 patients from Turku University Hospital, that was the first one to start using the registry in August 2014. A method to import predefined structured brain and spinal cord MRI data into the registry has been piloted in the Kuopio University Hospital. A patient application for patients to import data of their symptoms and wellbeing into the closed hospital register to assist their doctor in therapy decision making will be piloted in Turku University Hospital during autumn 2016.
Conclusions: The Finnish MS registry has been successfully launched in all university hospitals and most central hospitals in Finland. Integration of the register into the electronic patient files will provide a unique avenue for automated structured data capture of MS in Finnish health care system in near future.
Disclosure:
Niku Oksala is an employee of StellarQ.
The other authors have been nominated into the steering board by the Finnish Neurological Association and have nothing to disclose.
The development of the registry software has been financially supported by Biogen Idec, Genzyme, Novartis, Roche, Teva and the Finnish Funding Agency for Technology and Innovation (Tekes).
Abstract: P348
Type: Poster
Abstract Category: Clinical aspects of MS - Clinical assessment tools
Background: The incidence and prevalence of MS in Finland are high and the structure of the Finnish health care system with publicly funded health care program is ideal for data basing of health administrative data. However, Finland has been the only Scandinavian country without a national MS register. To meet this need, Finnish Neurological Association assigned a steering board to develop an MS-registry in Finland in January 2011.
Methods: A registry software was developed with a private company, StellarQ. Each hospital joining the registry makes a contract with StellarQ and forms a closed registry of their own. National register data is obtained by combining anonymized data from each closed hospital registry.
Results: By April 2016 all 5 university hospitals and 6 central hospitals have joined the register. An initially internet based registry software service has been integrated into the electronic patients files during 2016 in most participating hospitals. Date of birth, gender and date of MS diagnosis (ICD-code G35) have been registered from altogether 6304 MS patients and 548 patients with a clinically isolated syndrome, CIS (ICD-code G37.9). A total of 71 % of the MS patients and 64 of CIS patients are female. Complete retrospective data sets of EDSS evolution, relapses, corticosteroid pulses and medication side effects and reasons for medications discontinuations are presented from approximately 400 patients from Turku University Hospital, that was the first one to start using the registry in August 2014. A method to import predefined structured brain and spinal cord MRI data into the registry has been piloted in the Kuopio University Hospital. A patient application for patients to import data of their symptoms and wellbeing into the closed hospital register to assist their doctor in therapy decision making will be piloted in Turku University Hospital during autumn 2016.
Conclusions: The Finnish MS registry has been successfully launched in all university hospitals and most central hospitals in Finland. Integration of the register into the electronic patient files will provide a unique avenue for automated structured data capture of MS in Finnish health care system in near future.
Disclosure:
Niku Oksala is an employee of StellarQ.
The other authors have been nominated into the steering board by the Finnish Neurological Association and have nothing to disclose.
The development of the registry software has been financially supported by Biogen Idec, Genzyme, Novartis, Roche, Teva and the Finnish Funding Agency for Technology and Innovation (Tekes).