Registry-based stroke research in Taiwan: past and future

Abstract

Stroke registries are observational databases focusing on the clinical information and outcomes of stroke patients. They play an important role in the cycle of quality improvement. Registry data are collected from real-world experiences of stroke care and are suitable for measuring quality of care. By exposing inadequacies in performance measures of stroke care, research from stroke registries has changed how we manage stroke patients in Taiwan. With the success of various quality improvement campaigns, mortality from stroke and recurrence of stroke have decreased in the past decade. After the implementation of a nationwide stroke registry, researchers have been creatively expanding how they use and collect registry data for research. Through the use of the nationwide stroke registry as a common data model, researchers from many hospitals have built their own stroke registries with extended data elements to meet the needs of research. In collaboration with information technology professionals, stroke registry systems have changed from web-based, manual submission systems to automated fill-in systems in some hospitals. Furthermore, record linkage between stroke registries and administrative claims databases or other existing databases has widened the utility of registry data in research. Using stroke registry data as the reference standard, researchers have validated several algorithms for ascertaining the diagnosis of stroke and its risk factors from claims data, and have also developed a claims-based index to estimate stroke severity. By making better use of registry data, we believe that we will provide better care to patients with stroke.

Hypoperfusion Index Ratio as a Surrogate of Collateral Scoring on CT Angiogram in Large Vessel Stroke

“…Between 800 and 900 patients with acute ischemic stroke are admitted to our stroke ward annually. As a participating hospital of the nationwide Taiwan Stroke Registry (TSR) [ 13 ], NCKUH has been maintaining prospective stroke registries according to the TSR protocol since 2006. Our comprehensive stroke center prospectively enrolls patients who present to our hospital within 10 days after stroke onset and receive CT and/or MRI for the index stroke.…”

Apolipoprotein B Level and the Apolipoprotein B/Apolipoprotein A-I Ratio as a Harbinger of Ischemic Stroke: A Prospective Observation in Taiwan

“…Stroke events were ascertained with computer-based record linkages of the national identification numbers of the participants to the National Death Certificate System and the National Health Insurance Research Database in Taiwan [19]. Because reporting all deaths at local household registration offices is mandatory, the completeness of death registry is nearly 100% [20].…”

One-Year Risk of Recurrent Stroke and Death Associated with Vertebrobasilar Artery Stenosis and Occlusion in a Cohort of 10,515 Patients

“…The current data were derived from TSR, which includes mainly tertiary referral medical centers and regional hospitals [28]. About 80% of admitted stroke patients in Taiwan were registered during this period in the registry [28]. Because of the scale and large number of patients in the registry, certain data elements such as details regarding location of VBA stenosis or occlusion and location and etiology of recurrent stroke were not available.…”

“…Chinese populations had a higher proportion of small-vessel disease (33.1 vs. 19.3%) and of large artery atherosclerosis (25.4 vs. 14.7%), However, there was substantial variation in the distribution of ischemic subtypes, especially among the Chinese studies. The current data were derived from TSR, which includes mainly tertiary referral medical centers and regional hospitals [28]. About 80% of admitted stroke patients in Taiwan were registered during this period in the registry [28].…”