Scientists in the US can now benefit from a new centralised secure platform, which has been launched by the U.S. National Institutes of Health (NIH) to store and study medical record data from people diagnosed with COVID-19.
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The initiative is part of the National COVID Cohort Collaborative (N3C) programme aimed at collecting and using COVID-19 clinical data to answer critical research questions. It is funded by the National Center for Advancing Translational Sciences (NCATS) of NIH.
The new platform will facilitate data analysis, including that of health risk factors that indicate better or worse outcomes of the disease, and development of treatments. The data will be used only for COVID-19 research purposes.
It will systematically collect clinical, laboratory and diagnostic data from U.S. healthcare providers and standardise the data to be used in for research purposes. This is expected to accelerate the research efforts nationwide and improve clinical care through better-informed decision-making. For example, researchers and healthcare providers may find answers to clinically important questions, such as, ‘Can we predict who might need dialysis because of kidney failure?’ or ‘Who might need to be on a ventilator because of lung failure?’ and ‘Are there different patient responses to coronavirus infection that require distinct therapies?’
All approved users will have access to data regardless of whether they contribute data or not. It is noted that all the information is provided to NCATS as a Limited Data Set (LDS) with security and privacy ensured through the registration-driven use of N3C, data use agreements with institutions, and other measures. NCATS stores the data in the FedRAMP-authorised cloud-based database, and analysis must be conducted within the platform.
So far, 35 collaborating sites across the country have joined the initiative. The sites regularly contribute information on demographics, symptoms, medications, lab test results, and outcomes data over a five-year period.