R. van den Berg, D. van der Heijde, R. Landewé, K. van Lambalgen, T. Huizinga
Department of Rheumatology, Leiden University Medical Center, Leiden, the Netherlands. firstname.lastname@example.org
2014 Vol.32, N°5 ,Suppl.85 - PI 0135, PF 0140
Data management strategies and programmes
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The METEOR (Measurement of Efficacy of Treatment in the `Era of Outcome` in Rheumatology) initiative aims at improving care for RA patients by assisting rheumatologists in strict monitoring and tight control of disease activity. The state of the art of the METEOR initiative, the technical organisation of the database and future perspectives are described.
RA patients are followed in the daily practice setting; (follow-up) visits are registered via the tool or upload facility. The METEOR tool is an easy-to-use, stand-alone, web-based program free available to rheumatologists worldwide. The upload facility is developed to meet the wish of many local registries to upload their data into the METEOR database to benefit from benchmark and research facilities without giving up their own registries. Rheumatologists will always have access to full patient details of their own patients. Yet, patient identifying data are stored in an encrypted manner in the METEOR database in order to provide full patient anonymity to all other users.
While the tool can be used without IT involvement, the upload facility requires IT support. The incorporation of local registries into the METEOR database is time consuming, requires endeavours as well as technical support of both the local registries and the METEOR organisation, however, the combination of the tool and the upload facility has enabled the successful creation of a strong research database with real life data of 35,000 RA patients with more than 140,000 visits from all over the world!
The METEOR database offers the unique opportunity to study daily practice care as well as dedicated research questions in worldwide real life setting. Moreover, the METEOR`s collective experience can be accessed by those who think about initiating patient registries for all sorts of purposes. Consequently, these well-designed registries may help in treating RA patients even more successfully in future.
PMID: 25365103 [PubMed]
Received: 02/09/2014 - Accepted : 10/09/2014 - In Press: 30/10/2014 - Published: 03/11/2014