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Nine Months on, Data From ICMR’s National COVID Registry Remains Under Wraps

Nine Months on, Data From ICMR’s National COVID Registry Remains Under Wraps

Union health minister Harsh Vardhan. Photo: Facebook/Dr Harsh Vardhan

Mumbai: On September 28, 2020, the Indian Council of Medical Research (ICMR), AIIMS Delhi and Union health minister Harsh Vardhan launched the National Clinical Registry of COVID-19 (NCRC). The registry was meant to collect real-time data on thousands of COVID-19 patients across 100 hospitals. The data was to include clinical features, therapies administered, laboratory investigations and patient outcomes, among other things.

The government’s plan in turn was to use this data to better understand COVID-19 and eventually use the platform to test new drugs among hospitalised patients. According to ICMR, the NCRC’s expected outcome was weekly reports, insights for vulnerable groups like children and TB patients and periodic data published as scientific papers.

(On April 19, 2021, in a tweet describing the difference between the first and second waves in India, ICMR shared some summarised data from the NCRC.)

Patient enrollment for this programme began on August 17, 2020, according to sources in government familiar with the body’s workings. Thus far, they added, 20,000 patients have been enrolled in the registry. However, in nine months, the government is yet to realise any of the promised outcomes. No weekly reports or research papers have been published either.

A researcher associated with the NCRC told The Wire Science on condition of anonymity that this was because of bureaucratic infighting and non-cooperation between different institutes associated with the project.

ICMR’s National Institute of Medical Statistics, New Delhi, manages the registry. Questions sent to the institute’s head, Dr Vishnu Vardhana Rao, were unanswered at the time of publishing this article.

India’s COVID-19 National Task Force first recommended setting up the NCRC in March-April last year. In July, V..K Paul, the head of the task force, told Indian Express that the registry would help understand COVID-19, and determine what parameters — including genetic and/or environmental – increased the risk of death. He added that the registry would also be used to test new drugs and interventions like patient posture (proning) to improve treatment outcomes.

[Dr Jammi Nagaraj Rao, a public health physician in the UK, told The Wire Science that such a registry could yield timely and valuable India specific-insights on the progression of COVID-19 – was it functional.

One of the NCRC’s primary objectives was to study multisystem inflammatory syndrome in children (or MIS-C), a rare and life-threatening condition in children who are infected by COVID-19. The registry also planned to study COVID-19 patterns, if any, among other vulnerable populations, like tuberculosis and HIV patients and malnourished individuals.

But the lack of any data or reports from the registry has undermined the clinical care of such disadvantaged patients.

The registry also planned to add retrospective data, link to other registries, like the COVID-19 testing database, inform policy and clinical decisions and conduct clinical trials. There have been no updates on any of that having happened.

“If the NCRC had collected and shared information on steroid use and blood sugar levels, we would have learnt a lot about the risk factors for mucormycosis,” Dr Rao said.

Similar registries in other countries have yielded valuable insights. For example, a recent study from the UK government’s health agency estimated the impact of the delta variant on vaccines, based on data from its national COVID-19 registry.

The US Centres for Disease Control also has a national registry called COVID-19 associated hospitalisation surveillance network (COVID-NET), which provides real-time, region-specific data on hospitalised patients.

A questionnaire emailed to ICMR hadn’t not elicited a response at the time of publishing this article.

Ronak Borana is a science communicator based in Mumbai. He tweets at @ronaklmno.

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