Background/Purpose:  Patient registries both disease-and drug-based complement information obtained from clinical trials. Long-term outcomes studies can provide information useful for patients. The Agency for Healthcare Research and Quality (AHRQ) has developed a guide to standardized registries in order to optimize their quality. Objectives: To identify worldwide registries assessing patients with rheumatoid arthritis (RA) and describe their collected and reported variables. To evaluate the reporting of quality components in RA registries.

Methods: We performed an environmental scan to identify registries collecting data on patients with RA. The sample of registries was identified through: i) Google, ii) PubMed, and iii) clinicaltrials.gov. We also manually searched the list of references of selected reviews on this topic. One author selected the registries and two additional investigators reviewed the list for accuracy and provided additional registry names and references. Registry characteristics and variables were summarized and their differences explored to provide a preliminary assessment of their current strengths and limitations. We also evaluated the quality components of each registry using the basic elements of good practice developed by AHRQ. We considered the domain as reported when at least one of the following items was provided: i) planning, ii) design iii) data elements and sources, and iv) ethics, privacy and governance. Descriptive statistics were performed.

Results: We identified 90 worldwide registries. Out of the total, 59% (53) were patient-based registries and 41% (37) drug-based registries. Drug-based registries primarily evaluating biologic therapies and 83% of them, also included patients with other inflammatory arthritis with biologic treatment. The reported information was different if it was a patient or a drug-based registry: Radiological information, seropositivity, measures of socio-economic status, work disability and patient reported outcomes such as functional capacity; were more frequently reported in patient-based registries (p<0.05). On the other hand, comorbidities and biologic related outcomes such as adverse events and response, were most liked to be reported in drug-based registries (p<0.05). We have not found any difference between both registries in reporting in: self-reported patient disease indices, quality of life, fatigue, sleep, depression and stiffness. Regarding reporting of quality domains, the domain most frequently reported in all registries was data elements and sources (82%). Planning, design and ethics, privacy, and governance were reported less frequently (12%, 19% and 27%, respectively). We have not found any significant difference in reporting between drug and patient-based registries.

Conclusion:  Our preliminary results showed that a broad variety of outcomes are collected in registries of patients with RA. Efforts should be made to standardize and to enhance the quality of collecting and reporting elements of good practice for RA patient registries.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/environmental-scan-of-rheumatoid-arthritis-patient-registries-around-the-world-an-omeract-initiative/