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COVID-19 Registry Bill Introduced

Dozens of Democrats in the state Senate support creating a COVID-19 Health Registry.

Introduced last month in the Senate by Sen. Brad Hoylman, D-New York City, S.5927 has 22 Democrat co-sponsors. Hoylman proposes to amend the state Public Health Law to establish the registry to track the long-term health impacts and outcomes of volunteer enrollees who have been infected with COVID-19.

The state Health Department would be able to periodically survey those who enroll in the registry and to share survey data or other registry information with researchers for the purpose of medical, public health or other scientific research; and providing enrollees with information about COVID-19-related health studies, programs, benefits and other relevant information. Any data shared by the registry with researchers must comply with confidentiality requirements and be conditioned on the free public accessibility of any resulting public studies, reports or findings.

“The sudden emergence and rapid spread of COVID-19 around the world has led to an evolving understanding of the transmissibility, virulence and symptoms of the virus by scientists and public health experts that continues to this day,” Hoylman wrote in his legislative justification. “Questions remain as to why approximately 80% of those infected with COVID-19 experience mild to no symptoms, while the remainder experience a more severe response that can result in hospitalization or death, and weeks-long recoveries for those who survive.”

The state Health Department would have to issue annual reports on the registry, with the first such report including strategies for implementation of the registry and promotion of the registry to the general public, with a particular focus on enrollees belonging to racial and ethnic groups that have been disproportionately impacted by the COVID-19 pandemic. Subsequent annual reports would include findings of any surveys conducted by Health Department, the findings of any scientific studies, papers or reports produced using data or information collected in the registry, and recommendations for state action to address health issues or trends.

“There is also growing awareness and concern about post-acute COVID-19 syndrome, sometimes referred to as ‘long COVID,’ in which a small but significant percentage of patients experience persistent symptoms weeks or months after recovering from their initial infection,” Hoylman wrote. “It is vital that the state of New York commit to monitoring and tracking the long-term health impacts of COVID-19, even as effective vaccines become more widely available. The establishment of a voluntary registry of New Yorkers who survived COVID-19 infection holds the promise of providing public health experts with a database of information that may lead to a better understanding of trends in long-term illness and recovery, and the needs of survivors, particularly those suffering from post-acute COVID-19 syndrome.”

Companion legislation has not yet been introduced in the state Assembly.

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