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Covid 'long haulers' push for 9/11-style health registry to help improve treatment

State and federal lawmakers, with the support of unions, are looking to survivor registries created after 9/11 as a model for helping potentially millions of people with often-debilitating long-term symptoms of Covid-19.

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ANALYSIS: COVID pandemic urgency distrupted initial evidence based research efforts

How COVID broke the evidence pipeline

It wasn’t long into the pandemic before Simon Carley realized we had an evidence problem. It was early 2020, and COVID-19 infections were starting to lap at the shores of the United Kingdom, where Carley is an emergency-medicine doctor at hospitals in Manchester. Carley is also a specialist in evidence-based medicine — the transformative idea that physicians should decide how to treat people by referring to rigorous evidence, such as clinical trials.

As cases of COVID-19 climbed in February, Carley thought that clinicians were suddenly abandoning evidence and reaching for drugs just because they sounded biologically plausible. Early studies Carley saw being published often lacked control groups or enrolled too few people to draw firm conclusions. “We were starting to treat patients with these drugs initially just on what seemed like a good idea,” he says. He understood the desire to do whatever is possible for someone gravely ill, but he also knew how dangerous it is to assume a drug works when so many promising treatments prove to be ineffective — or even harmful — in trials.

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