NIH Sources Sought: Research Support Services for Impact of Rare Diseases on Patients and Healthcare Systems (IDeaS) Initiative

Notice ID: 75N95021Q00316

“In order to better assess the healthcare utilization, diagnostic journey and clinical course, and cost/utilization impacts of rare diseases on patients and healthcare systems, NCATS ORDR is undertaking pilot assessments in order to develop methods to more accurately identify rare disease patients and assess the impacts (utilization and cost) of rare diseases on healthcare systems by leveraging large health databases and analytics support. Such efforts to gather, quantify, and delineate the data behind rare disease patients will not only accumulate much-needed rare disease knowledge and help to identify research gaps, but will also advance both common and rare disease research, care, and segmentation associated with precision medicine. NCATS ORDR seeks to identify utilization patterns prior to accurate diagnosis and estimate costs of medical care during the diagnostic odyssey, with the larger goal of using this information to inform the development of approaches to diagnose and identify rare disease patients sooner, while improving overall patient care management. An initial set of fourteen representative rare diseases has been chosen to pilot these efforts and subsequently could be broadened to a larger set of rare diseases.”

“Purpose and Objectives: The National Center for Advancing Translational Sciences (NCATS) Office of Rare Diseases Research (ORDR) is seeking research support services to enable the generation of independent analyses, computational tools, and methodologies on the prevalence, clinical course, cost, and utilization impact of patients with rare diseases, that leverage large healthcare systems databases and data sources.”

“Project requirements: Generate independent analyses and analytics support to capture the prevalence, clinical course, and cost/utilization impact of rare diseases leveraging large healthcare databases. In addition, generate computational tools and generalizable methodologies that could be tested/used at various health care provision sites for more accurately identifying patients with a potential rare disease to shorten the diagnostic odyssey for rare disease patients…”

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