Patient data essential to Covid-19 research

A study shows that vital patient information is lacking in the Covid-19 genome database

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Image Credit: Polina Tankilevitch

A new study led by the Commonwealth Scientific and Industrial Research Organisation (CSIRO) has revealed that entries in the Covid-19 genome database are lacking patient information essential to the understanding of the virus.

This discovery has incited the proposition of a standardised data collection method, focusing on collecting detailed information about the 'patient journey' of Covid-19 patients. A standardised method enables better understanding of the evolution of the virus through the improved gathering and sharing of this vital data.

Dr S. S. Vasan, a senior author of the paper, is an honorary professor at the University of York. Vasan has commented that "de-identified patient data" associated with "virus genome sequences" is urgently required. This information would be instrumental in revealing "whether disease outcomes are due to a mutation", or "host factors such as age, gender and comorbidities".

Vasan notes that it is “very likely this information is known to the clinical teams who treated the patient". However, information is not necessarily contributed to public organisations such as GISAID due to the complexity of the existing data system.

GISAID acknowledged the importance of clinical data in April 2020, when providing information on the 'patient status' was made compulsory for virus sequences uploaded to the initiative. However, further improvements were required. The study revealed that the collection of clinical data has been affected by weak digital infrastructure, and proposed an improved data collection technique, including a standardised vocabulary and health system mechanism.

Professor Eugene Athan, Barwon Health's director of infectious diseases, praised the new data collection proposition. He suggested that "having a simplified and standardised approach to sharing relevant patient information alongside genome sequences will enable critical research into COVID-19 and comparisons between different studies and population sets".

He seemed optimistic about the system when he encouraged "clinicians and scientists around the world to share, wherever possible, de-identified patient information and clinical outcomes using this template to support ongoing research efforts".

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