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Rheumatology Advance Access published online on July 16, 2008
Rheumatology, doi:10.1093/rheumatology/ken245
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© The Author 2008. Published by Oxford University Press on behalf of the British Society for Rheumatology. All rights reserved. For Permissions, please email: journals.permissions@oxfordjournals.org

Development of a web-based register for the Dutch national study on biologicals in JIA: www.ABC-register.nl

F. H. M. Prince1, I. S. Ferket1, S. Kamphuis1, W. Armbrust2, R. ten Cate3, E. P. A. H. Hoppenreijs4, Y. Koopman-Keemink5, M. A. J. van Rossum6,7, M. van Santen-Hoeufft8, M. Twilt1,3 and L. W. A. van Suijlekom-Smit1

1Department of Paediatrics/Paediatric Rheumatology, Erasmus MC Sophia Children's Hospital, Rotterdam, 2Department of Paediatrics/Paediatric Rheumatology, Beatrix Children's Hospital, University Medical Centre, Groningen, 3Department of Paediatrics/Paediatric Rheumatology, Leiden University Medical Centre, Leiden, 4Department of Paediatrics/Paediatric Rheumatology, Radboud University Nijmegen Medical Centre, Nijmegen, 5Department of Paediatrics, Hagaziekenhuis Juliana Children's Hospital, Den Haag, 6Department of Paediatrics/Paediatric Rheumatology, Emma Children's Hospital AMC, 7Department of Rheumatology, Jan van Breemen Institute, Amsterdam and 8Department of Internal Medicine, Subdivision Rheumatology, Academic Hospital Maastricht, Maastricht, The Netherlands.

Correspondence to: F. H. M. Prince, Department of Paediatrics, Sp 1545, Erasmus MC Sophia Children's Hospital, PO Box 2060, 3000 CB Rotterdam, The Netherlands. E-mail: f.prince{at}erasmusmc.nl


  Abstract

Objectives. Most clinical studies use paper case record forms (CRFs) to collect data. In the Dutch multi-centre observational study on biologicals we encountered several disadvantages of using the paper CRFs. These are delay in data collection, lack of overview in collected data and difficulties in obtaining up-to-date interim reports. Therefore, we wanted to create a more effective method of data collection compared with CRFs on paper in a multi-centre study.

Methods. We designed a web-based register with the intention to make it easy to use for participating physicians and at the same time accurate and up-to-date. Security demands were taken into account to secure the safety of the patient data.

Results. The web-based register was tested with data from 161 juvenile idiopathic arthritis patients from nine different centres. Internal validity was obtained and user-friendliness guaranteed. To secure the completeness of the data automatically generated e-mail alerts were implemented into the web-based register. More transparency of data was achieved by including the option to automatically generate interim reports of data in the web-based register. The safety was tested and approved.

Conclusions. By digitalizing the CRF we achieved our aim to provide easy, rapid and safe access to the database and contributed to a new way of data collection. Although the web-based register was designed for the current multi-centre observational study, this type of instrument can also be applied to other types of studies. We expect that especially collaborative study groups will find it an efficient tool to collect data.

KEY WORDS: Web-based register, Data collection, Multi-centre study, Juvenile idiopathic arthritis, Biologicals

Submitted 17 January 2008; revised version accepted 5 June 2008.
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