The Long COVID Labs Patient Registry is Officially Open!

For so long, the Long COVID community has only had anecdotes. Sparks of hope shared on X and Reddit.  Long COVID patients experimenting, not knowing whether a potential treatment would help them, but needing to try something.  And then sharing that experience with others, in case it could somehow lead to an answer.

‍Now, Long Covid research is entering a new phase.

‍The patient community- along with the researchers and medical professionals who’ve stuck by us- have done an amazing job of raising awareness, getting the word out, and making the case that Long COVID is real.The wider scientific community is beginning to understand that patients deserve help, not platitudes.  Governments, pharma companies and other institutions are starting to take notice. Yet a gap still lingers, from our governing bodies acknowledging the problem to actually investing in root-cause treatments that can actually solve this crisis.

‍That’s why Long COVID Labs is joining the fight.

We built our Patient Registry to give patients a way to come together and build a case for root-cause treatments with concrete, scientific evidence.To truly change minds at the FDA and drug companies, we need to move beyond anecdotes and offer compelling data in a format they will recognize.

‍Real World Evidence

‍We built our Registry to take advantage of a new, rapid pathway to drug approval called Real World Evidence.

Traditionally, it can take years or even decades for a new discovery in the lab to turn into a treatment patients can receive at their doctor’s office.

The Real World Evidence pathway allows a much faster path for drug approval.  It was signed into law in 2018 to allow researchers to collect data on how patients are responding to a drug in everyday life - not just within a clinical trial.

‍How does it work?

‍Real World Evidence allows researchers to collect data from the lived experiences of everyday patients taking a drug, without requiring them to be part of a formal clinical trial. In cases like these, the FDA considers data from patients who receive a drug as part of their medical care - and may decide to make that drug more widely available.

Real World evidence has been used to expand the approvals for many types of drugs, including cancer medications and treatments for rare genetic conditions. We’re determined to do the same for Long COVID patients.

We believe there are existing medications which could successfully be repurposed to treat Long COVID patients.

We’re focusing on antivirals, monoclonals, and immune stimulants - the treatments which evidence shows are most likely to be effective for SARS-CoV-2 persistence.

Our founder Rohan recovered from Long COVID after receiving a combination of the antiviral drug Paxlovid and Evusheld monoclonal antibodies.  He has now been recovered for nearly four years. We believe there is potential for millions of patients all over the world to recover the same way.  

That’s why we’re working to expand access for medications like the ones Rohan took. We know access is limited and that these medications are hard to get.  Yet we also know that some patients are able to access these drugs now - and it could help the whole community if those patients have a way to share their data.

‍That’s why we built our FDA-compliant Patient Registry.

‍Our Patient Registry lets patients record their data in a way that can make a lasting impact. We’ve created a platform where patients can record their data from before, during and after their treatments - in a scientifically rigorous format.

We’ve consulted Long COVID researchers and statisticians to make sure we come up with the most effective ways for Long COVID patients to generate actionable data from home.

‍To join the Long COVID Labs Patient Registry:

‍You can download the Long COVID Moonshot App on both iOS and Android.  There, you can log your symptoms, and let us know if you’re going to start a new root cause treatment such as antivirals, monoclonals, and more!

We will ask you to take a scientifically validated survey, the Stanford STOP-PASC survey, weekly for 4 weeks before and 12 weeks following treatment.  

We’ll also ask you to track your heart rate variability (HRV) to show how the treatment is impacting your overall health. (More on that later!).

‍To find the Long COVID Labs Moonshot App:

‍iOS app: https://apps.apple.com/us/app/long-covid-labs-moonshot/id6755445158

‍Android: https://play.google.com/store/apps/details?id=com.longcovidlabs.lgl&hl=en_US

‍We can’t wait to see you there!  

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