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.
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