Rheumatic diseases are heterogeneous across and within conditions in terms of their onset, mechanisms, clinical manifestations, comorbidities and multisystem involvement, disease course and response to treatment, patient experience, and information required for medical decision-making. Within the spectrum of rheumatic diseases, careful and comprehensive measurement of these factors over time can be combined with advanced statistical modeling techniques to define subsets within diseases. Over the past 10 years in the Division of Rheumatology, an integrated clinical/translational research infrastructure embedded within clinical practice has allowed us to establish registries, which couple the longitudinal collection of clinical, laboratory, and diagnostic data with bio specimens and patient-reported information in each of our Centers of Excellence (Arthritis, Lupus, Scleroderma, Myositis, Vasculitis, Sjogren's syndrome, Lyme). Our investigators are now optimally positioned to discover phenotypes reflecting common pathobiologic mechanisms and manifestations, and link these with targeted treatments that substantially improve patient outcomes. The past 5 years also have witnessed considerable changes in our overall healthcare system and research methodologies, presenting new opportunities and challenges. The complexity of evolving study designs and methods, privacy and security concerns, and regulatory aspects have grown substantially. Our ability to collate vast amounts of clinical and patient-reported outcomes has increased exponentially with EHRs. Against this backdrop are increasing calls to prioritize research that generates results that are meaningful to patients and clinicians who care for them. The Research Management and Patient Integrated Data (RAPID) Core has been specifically created to facilitate clinical and translational research in this changing environment. The overall goal of the RAPID Core is to streamline the process of human subjects research, integrate multiple sources of information, and foster patient-centered research.
The Specific Aims of the Core are to: 1) coordinate and oversee regulatory and operational aspects of human subjects research; 2) provide oversight and expertise to efficiently collect and export clinical and research data; and 3) facilitate patient-centered outcomes research (PCOR). The RAPID Core consists of 3 Hubs (Research Management, Clinical Data Integration, and PCOR) to accomplish each of these aims. The Core will be led by researchers and staff with experience across the research continuum and with evolving quantitative and qualitative methodologies. The RAPID Core will work closely with other Cores, the Rheumatology Centers of Excellence, and the rich resources and collaborators across Johns Hopkins. In summary, the RAPID Core will create a robust enrichment program and provide guidance and resources to support state-of-the-science clinical and translation research to improve the lives of people living with rheumatic and autoimmune diseases.

Agency
National Institute of Health (NIH)
Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Type
Center Core Grants (P30)
Project #
5P30AR070254-03
Application #
9533177
Study Section
Special Emphasis Panel (ZAR1)
Project Start
Project End
Budget Start
2018-07-01
Budget End
2019-06-30
Support Year
3
Fiscal Year
2018
Total Cost
Indirect Cost
Name
Johns Hopkins University
Department
Type
DUNS #
001910777
City
Baltimore
State
MD
Country
United States
Zip Code
21205
Wohlfahrt, Alyssa; Bingham 3rd, Clifton O; Marder, Wendy et al. (2018) Responsiveness of Patient Reported Outcomes Measurement Information System (PROMIS) Measures in RA Patients Starting or Switching a DMARD. Arthritis Care Res (Hoboken) :
Darrah, Erika; Giles, Jon T; Davis, Ryan L et al. (2018) Autoantibodies to Peptidylarginine Deiminase 2 Are Associated With Less Severe Disease in Rheumatoid Arthritis. Front Immunol 9:2696
Leung, Ying Ying; Ogdie, Alexis; Orbai, Ana-Maria et al. (2018) Classification and Outcome Measures for Psoriatic Arthritis. Front Med (Lausanne) 5:246
Bartlett, S J; Gutierrez, A K; Butanis, A et al. (2018) Combining online and in-person methods to evaluate the content validity of PROMIS fatigue short forms in rheumatoid arthritis. Qual Life Res 27:2443-2451
Darrah, Erika; Yu, Fang; Cappelli, Laura C et al. (2018) Association of baseline peptidylarginine deiminase 4 autoantibodies with favorable response to treatment escalation in rheumatoid arthritis. Arthritis Rheumatol :
Albayda, Jemima; Bingham 3rd, Clifton O; Shah, Ami A et al. (2018) Metastatic joint involvement or inflammatory arthritis? A conundrum with immune checkpoint inhibitor-related adverse events. Rheumatology (Oxford) 57:760-762
Cappelli, Laura C; Konig, Maximilian F; Gelber, Allan C et al. (2018) Smoking is not linked to the development of anti-peptidylarginine deiminase 4 autoantibodies in rheumatoid arthritis. Arthritis Res Ther 20:59
Igusa, Takeru; Hummers, Laura K; Visvanathan, Kala et al. (2018) Autoantibodies and scleroderma phenotype define subgroups at high-risk and low-risk for cancer. Ann Rheum Dis 77:1179-1186
Cappelli, Laura C; Brahmer, Julie R; Forde, Patrick M et al. (2018) Clinical presentation of immune checkpoint inhibitor-induced inflammatory arthritis differs by immunotherapy regimen. Semin Arthritis Rheum 48:553-557
Lee, Yvonne C; Bingham 3rd, Clifton O; Edwards, Robert R et al. (2018) Association Between Pain Sensitization and Disease Activity in Patients With Rheumatoid Arthritis: A Cross-Sectional Study. Arthritis Care Res (Hoboken) 70:197-204

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