Summary of survey results listing of types of data collected in 7 Canadian Rheumatoid Arthritis Registries/Cohorts*.
| Types of Data | Frequency and Variation of Data Collection in the Existing Cohorts | ||
|---|---|---|---|
| Routinely Collected and Limited Variation in Collection Methods | Routinely Collected but Variation in Collection Methods | Infrequently Collected | |
| Demographic | |||
| Sex | X | ||
| Age | X | ||
| Postal code | X | ||
| Ethnicity | X | ||
| Socioeconomic variables (income, level of education, years of education, employment, prescription coverage) | X | ||
| Reporting disease duration (patient vs physician) | X | ||
| Comorbidities | |||
| Comorbidity type, crude number, date of diagnosis, therapy of comorbidity | X | ||
| Mental health | X | ||
| Environmental exposures | |||
| Smoking (yes/no, cigarettes per day, current/previous never, pack/yr history) | X | ||
| Investigations | |||
| Serology (RF and anti-CCP) | X | ||
| Acute-phase reactants (ESR, CRP) | X | ||
| Radiographs of hands and feet | X | ||
| Disease activity | |||
| Swollen joint counts (SJC 28, 66, 44) | X | ||
| Tender joint counts (TJC 28, 32, 44) | X | ||
| Composite disease activity score (DAS28-ESR, DAS-28 CRP, SDAI, CDAI) | X | ||
| Evaluator global assessment of disease activity (related to arthritis, within the last week, total today, global health) | X | ||
| Patient’s global assessment of disease activity (related to arthritis, within the last week, total today, global health) | X | ||
| Patient-reported disease activity (RADAI or other) | X | ||
| Patient-reported outcomes | |||
| Health-related Quality of Life (SF-36, EQ-5D, or other) | X | ||
| Patient assessment of function (HAQ, HAQ-DI, CLINHAQ, PCS of SF-36) | X | ||
| Pain (within last week, related to arthritis, general pain) | X | ||
| Fatigue (VAS, numerical scale) | X | ||
| Medications | |||
| RA-specific treatment (categories of treatment and type, dose, frequency, duration of use, stop reason; DMARD, biologics, steroids, NSAID) | X | ||
| Non-RA medications | X | ||
| Adverse events (serious, any, only if drug-related) | X | ||
| Other | |||
| Joint surgery | X | ||
| BMI | X | ||
| Vaccinations | X | ||
| Pregnancy | X | ||
| Genetic markers | X | ||
↵* The 7 Canadian Rheumatoid Arthritis Cohorts include Rheum4U (Calgary); Rhumadata (Montreal and Quebec City); Rapport (Calgary); Early Inflammatory Arthritis Cohort (Calgary); Ontario Best Practices Research Initiative (OBRI, Ontario); Canadian Early Arthritis Cohort (CATCH). Anti-CCP: anticyclic citrullinated peptide antibodies; BMI: body mass index; CDAI: Clinical Disease Activity Index; CLINHAQ: Clinical Health Assessment Questionnaire; CRP: C-reactive protein; DAS28: 28-joint Disease Activity Score; RA: rheumatoid arthritis; DMARD: disease-modifying antirheumatic drugs; ESR: erythrocyte sedimentation rate; HAQ: Health Assessment Questionnaire; HAQ-DI: Health Assessment Questionnaire–Disability Index; NSAID: nonsteroidal antiinflammatory drugs; PCS: physical component summary (from SF-36 survey); RADAI: Rheumatoid Arthritis Disease Activity Index; RF: rheumatoid factor; SDAI: Simplified Disease Activity Index; SF-36: Medical Outcomes Study Short Form-36; SJC: swollen joint count; TJC: tender joint count; VAS: visual analog scale.