Methodological Challenges When Comparing Demographic and Clinical Characteristics of International Observational Registries

Suzanne M M Verstappen, Johan Askling, Niklas Berglind, Stefan Franzen, Thomas Frisell, Christopher Garwood, Jeffrey D. Greenberg, Marie Holmqvist, Laura Horne, Kathy Lampl, Kaleb Michaud, Fredrik Nyberg, Dimitrios A. Pappas, George Reed, Deborah P M Symmons, Eiichi Tanaka, Trung N. Tran, Hisashi Yamanaka, Meilien Ho

Research output: Contribution to journalArticle

Abstract

Objective Comparisons of data from different registries can be helpful in understanding variations in many aspects of rheumatoid arthritis (RA). The study aim was to assess and improve the comparability of demographic, clinical, and comorbidity data from 5 international RA registries. Methods Using predefined definitions, 2 subsets of patients (main cohort and subcohort) from 5 international observational registries (Consortium of Rheumatology Researchers of North America Registry [CORRONA], the Swedish Rheumatology Quality of Care Register [SRR], the Norfolk Arthritis Register [NOAR], the Institute of Rheumatology Rheumatoid Arthritis cohort [IORRA], and CORRONA International) were evaluated and compared. Patients ages >18 years with RA, and present in or recruited to the registry from January 1, 2000, were included in the main cohort. Patients from the main cohort with positive rheumatoid factor and/or erosive RA who had received ≥1 synthetic disease-modifying antirheumatic drug (DMARD), and switched to or added another DMARD, were included in the subcohort at time of treatment switch. Results Age and sex distributions were fairly similar across the registries. The percentage of patients with a high Disease Activity Score in 28 joints score varied between main cohorts (17.5% IORRA, 18.9% CORRONA, 24.7% NOAR, 27.7% CORRONA International, and 36.8% SRR), with IORRA, CORRONA, and CORRONA International including more prevalent cases of RA; the differences were smaller for the subcohort. Prevalence of comorbidities varied across registries (e.g., coronary artery disease ranged from 1.5% in IORRA to 7.9% in SRR), partly due to the way comorbidity data were captured and general cultural differences; the pattern was similar for the subcohorts. Conclusion Despite different inclusion criteria for the individual RA registries, it is possible to improve the comparability and interpretability of differences across RA registries by applying well-defined cohort definitions.

Original languageEnglish (US)
Pages (from-to)1637-1645
Number of pages9
JournalArthritis Care and Research
Volume67
Issue number12
DOIs
StatePublished - Dec 1 2015
Externally publishedYes

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Registries
Rheumatology
Demography
Rheumatoid Arthritis
North America
Research Personnel
Comorbidity
Antirheumatic Agents
Arthritis
Sex Distribution
Rheumatoid Factor
Quality of Health Care
Age Distribution
Coronary Artery Disease
Joints

ASJC Scopus subject areas

  • Rheumatology

Cite this

Verstappen, S. M. M., Askling, J., Berglind, N., Franzen, S., Frisell, T., Garwood, C., ... Ho, M. (2015). Methodological Challenges When Comparing Demographic and Clinical Characteristics of International Observational Registries. Arthritis Care and Research, 67(12), 1637-1645. https://doi.org/10.1002/acr.22661

Methodological Challenges When Comparing Demographic and Clinical Characteristics of International Observational Registries. / Verstappen, Suzanne M M; Askling, Johan; Berglind, Niklas; Franzen, Stefan; Frisell, Thomas; Garwood, Christopher; Greenberg, Jeffrey D.; Holmqvist, Marie; Horne, Laura; Lampl, Kathy; Michaud, Kaleb; Nyberg, Fredrik; Pappas, Dimitrios A.; Reed, George; Symmons, Deborah P M; Tanaka, Eiichi; Tran, Trung N.; Yamanaka, Hisashi; Ho, Meilien.

In: Arthritis Care and Research, Vol. 67, No. 12, 01.12.2015, p. 1637-1645.

Research output: Contribution to journalArticle

Verstappen, SMM, Askling, J, Berglind, N, Franzen, S, Frisell, T, Garwood, C, Greenberg, JD, Holmqvist, M, Horne, L, Lampl, K, Michaud, K, Nyberg, F, Pappas, DA, Reed, G, Symmons, DPM, Tanaka, E, Tran, TN, Yamanaka, H & Ho, M 2015, 'Methodological Challenges When Comparing Demographic and Clinical Characteristics of International Observational Registries', Arthritis Care and Research, vol. 67, no. 12, pp. 1637-1645. https://doi.org/10.1002/acr.22661
Verstappen, Suzanne M M ; Askling, Johan ; Berglind, Niklas ; Franzen, Stefan ; Frisell, Thomas ; Garwood, Christopher ; Greenberg, Jeffrey D. ; Holmqvist, Marie ; Horne, Laura ; Lampl, Kathy ; Michaud, Kaleb ; Nyberg, Fredrik ; Pappas, Dimitrios A. ; Reed, George ; Symmons, Deborah P M ; Tanaka, Eiichi ; Tran, Trung N. ; Yamanaka, Hisashi ; Ho, Meilien. / Methodological Challenges When Comparing Demographic and Clinical Characteristics of International Observational Registries. In: Arthritis Care and Research. 2015 ; Vol. 67, No. 12. pp. 1637-1645.
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abstract = "Objective Comparisons of data from different registries can be helpful in understanding variations in many aspects of rheumatoid arthritis (RA). The study aim was to assess and improve the comparability of demographic, clinical, and comorbidity data from 5 international RA registries. Methods Using predefined definitions, 2 subsets of patients (main cohort and subcohort) from 5 international observational registries (Consortium of Rheumatology Researchers of North America Registry [CORRONA], the Swedish Rheumatology Quality of Care Register [SRR], the Norfolk Arthritis Register [NOAR], the Institute of Rheumatology Rheumatoid Arthritis cohort [IORRA], and CORRONA International) were evaluated and compared. Patients ages >18 years with RA, and present in or recruited to the registry from January 1, 2000, were included in the main cohort. Patients from the main cohort with positive rheumatoid factor and/or erosive RA who had received ≥1 synthetic disease-modifying antirheumatic drug (DMARD), and switched to or added another DMARD, were included in the subcohort at time of treatment switch. Results Age and sex distributions were fairly similar across the registries. The percentage of patients with a high Disease Activity Score in 28 joints score varied between main cohorts (17.5{\%} IORRA, 18.9{\%} CORRONA, 24.7{\%} NOAR, 27.7{\%} CORRONA International, and 36.8{\%} SRR), with IORRA, CORRONA, and CORRONA International including more prevalent cases of RA; the differences were smaller for the subcohort. Prevalence of comorbidities varied across registries (e.g., coronary artery disease ranged from 1.5{\%} in IORRA to 7.9{\%} in SRR), partly due to the way comorbidity data were captured and general cultural differences; the pattern was similar for the subcohorts. Conclusion Despite different inclusion criteria for the individual RA registries, it is possible to improve the comparability and interpretability of differences across RA registries by applying well-defined cohort definitions.",
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AU - Verstappen, Suzanne M M

AU - Askling, Johan

AU - Berglind, Niklas

AU - Franzen, Stefan

AU - Frisell, Thomas

AU - Garwood, Christopher

AU - Greenberg, Jeffrey D.

AU - Holmqvist, Marie

AU - Horne, Laura

AU - Lampl, Kathy

AU - Michaud, Kaleb

AU - Nyberg, Fredrik

AU - Pappas, Dimitrios A.

AU - Reed, George

AU - Symmons, Deborah P M

AU - Tanaka, Eiichi

AU - Tran, Trung N.

AU - Yamanaka, Hisashi

AU - Ho, Meilien

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N2 - Objective Comparisons of data from different registries can be helpful in understanding variations in many aspects of rheumatoid arthritis (RA). The study aim was to assess and improve the comparability of demographic, clinical, and comorbidity data from 5 international RA registries. Methods Using predefined definitions, 2 subsets of patients (main cohort and subcohort) from 5 international observational registries (Consortium of Rheumatology Researchers of North America Registry [CORRONA], the Swedish Rheumatology Quality of Care Register [SRR], the Norfolk Arthritis Register [NOAR], the Institute of Rheumatology Rheumatoid Arthritis cohort [IORRA], and CORRONA International) were evaluated and compared. Patients ages >18 years with RA, and present in or recruited to the registry from January 1, 2000, were included in the main cohort. Patients from the main cohort with positive rheumatoid factor and/or erosive RA who had received ≥1 synthetic disease-modifying antirheumatic drug (DMARD), and switched to or added another DMARD, were included in the subcohort at time of treatment switch. Results Age and sex distributions were fairly similar across the registries. The percentage of patients with a high Disease Activity Score in 28 joints score varied between main cohorts (17.5% IORRA, 18.9% CORRONA, 24.7% NOAR, 27.7% CORRONA International, and 36.8% SRR), with IORRA, CORRONA, and CORRONA International including more prevalent cases of RA; the differences were smaller for the subcohort. Prevalence of comorbidities varied across registries (e.g., coronary artery disease ranged from 1.5% in IORRA to 7.9% in SRR), partly due to the way comorbidity data were captured and general cultural differences; the pattern was similar for the subcohorts. Conclusion Despite different inclusion criteria for the individual RA registries, it is possible to improve the comparability and interpretability of differences across RA registries by applying well-defined cohort definitions.

AB - Objective Comparisons of data from different registries can be helpful in understanding variations in many aspects of rheumatoid arthritis (RA). The study aim was to assess and improve the comparability of demographic, clinical, and comorbidity data from 5 international RA registries. Methods Using predefined definitions, 2 subsets of patients (main cohort and subcohort) from 5 international observational registries (Consortium of Rheumatology Researchers of North America Registry [CORRONA], the Swedish Rheumatology Quality of Care Register [SRR], the Norfolk Arthritis Register [NOAR], the Institute of Rheumatology Rheumatoid Arthritis cohort [IORRA], and CORRONA International) were evaluated and compared. Patients ages >18 years with RA, and present in or recruited to the registry from January 1, 2000, were included in the main cohort. Patients from the main cohort with positive rheumatoid factor and/or erosive RA who had received ≥1 synthetic disease-modifying antirheumatic drug (DMARD), and switched to or added another DMARD, were included in the subcohort at time of treatment switch. Results Age and sex distributions were fairly similar across the registries. The percentage of patients with a high Disease Activity Score in 28 joints score varied between main cohorts (17.5% IORRA, 18.9% CORRONA, 24.7% NOAR, 27.7% CORRONA International, and 36.8% SRR), with IORRA, CORRONA, and CORRONA International including more prevalent cases of RA; the differences were smaller for the subcohort. Prevalence of comorbidities varied across registries (e.g., coronary artery disease ranged from 1.5% in IORRA to 7.9% in SRR), partly due to the way comorbidity data were captured and general cultural differences; the pattern was similar for the subcohorts. Conclusion Despite different inclusion criteria for the individual RA registries, it is possible to improve the comparability and interpretability of differences across RA registries by applying well-defined cohort definitions.

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