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The RISE Registry Delivers Practice-Based Evidence to Rheumatologists

Nancy A. Baker, ScD, MPH, OT; Margarita Fallena, MD; Tracy Johansson, MS; Janell Martin, CAE; Kaleb Michaud, PhD; Cynthia S. Crowson, PhD; Dina L. Jones, PT, PhD  |  Issue: April 2019  |  April 15, 2019

Overview of the process to complete electronic health record connection with the Rheumatology Informatics System for Effectiveness (RISE) registry.

Figure 1. Overview of the process to complete electronic health record connection with the Rheumatology Informatics System for Effectiveness (RISE) registry.

Interested clinicians are encouraged to contact RISE staff to set up a demonstration of the tool and an inside look at the dashboard at the practice’s convenience prior to registering.

Research Use

RISE is also an important tool for researchers interested in practice-based research, because it can be used to look for evolving trends in care, patient outcomes and best practices.2 RISE is a national database that continuously collects data from the EHRs of participating practices. It is a treasure trove of data on clinical practice and has the potential to provide researchers with rich data that can inform evolving research needs.

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RISE data go through several levels of cleaning and validation, including the removal of patient identifiers. This allows researchers and clinicians to confidently use RISE data to understand what is actually happening in real-world practices and how patients are affected by the care they are receiving. RISE data available for research currently contains information on approximately 1.5 million patients and 9 million patient encounters.

RISE offers access to data from a diverse patient population: not only the most common diagnoses of rheumatoid arthritis (RA) and osteoarthritis, but also less common disorders, such as Takayasu’s arteritis, dermatomyositis and Behçet’s disease. RISE contains detailed information on patient demographics, such as age, insurance status and geography, and on clinical characteristics, such as diagnoses, medications and treatment outcomes, such as CDAI, RAPID3 and HAQ scores.

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Data from RISE are already lending new insights into patient care. Recent ACR/ARHP Annual Meeting abstracts included a discussion on the effect of diabetes on RA-related outcomes, practice variation in prescriptions of non-TNFi biologics and tofacitinib, and whether patients with moderate or high disease activity escalate their RA therapy according to treat-to-target principles.4-6 Overall, researchers using RISE data contributed six abstracts in 2018 and three in 2017.

Get Started

The ACR offers various pathways to accommodate different research and budget needs. Researchers interested in using RISE data are required to submit a formal data use request to the ACR (see Figure 2). All requests are reviewed by ACR staff and a committee of experts to determine feasibility and prevent overlap with other requests. All approved projects using RISE data are completed through a data analytic center with expertise in analyzing EHR data.

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Filed under:Quality Assurance/ImprovementResearch Rheum Tagged with:practice-based researchQualified Clinical Data Registries (QCDRs)Rheumatology Informatics System for Effectiveness (RISE) Registry

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