A new global collaboration of scientists, clinicians and patients aims to hasten clinical trials on long COVID

A new global collaboration of scientists, clinicians and patients aims to spur progress in research on long COVID.

The Long Covid Research Initiative (LCRI), part of the nonprofit PolyBio Research Foundation, is run by a team of about a dozen volunteers and thus far has amassed a roster of two dozen researchers and clinicians. While its efforts have been ongoing for the better part of the year, a formal announcement about the LCRI was made in early September. 

So far, its backers include Balvi, a scientific investment fund that has committed $15 million, and the Chan Soon-Shiong Family Foundation, which has donated an undisclosed amount. 

The Centers for Disease Control and Prevention estimates that nearly 8% of the U.S. population has long COVID. Many risks are associated with the condition, like blood clots and neuropathy. Yet no national tally was being kept on how many have long COVID until June, and it wasn’t until August that the U.S. government formalized an action plan to study it. Global research on the condition remains underfunded, the LCRI argues. As an independent organization, the LCRI knew it could help mitigate communication barriers in the scientific community and break down existing funding bottlenecks and bureaucracy that typically ails government-funded researchers

The LCRI's co-founders were motivated to take matters into their own hands. They noticed "while there are some research efforts, they don’t really reflect the enormity of the problem,” co-founder Henry Scott-Green, a Google product manager, told Fierce Healthcare. In August 2020, Scott-Green was infected himself and has been plagued by long COVID symptoms. Ultimately, the team is “trying to operate with speed and urgency,” Scott-Green said. “Patients really need answers now.” 

One of the key questions the initiative is trying to answer is whether the virus persists in the body, causing long COVID. It also aims to understand the consequences of that to the immune system and how to eliminate it. 

With thousands of patients already working with the LCRI, the organization intends to open up several long COVID research clinics around the country. The goal is to “empower the patient with the knowledge of what’s going on in their body,” explained Patrick Soon-Shiong, M.D., the transplant surgeon and biotech billionaire backing the initiative. Another aim is to let the patient own their data and decide how they want to share it. 

Soon-Shiong, who invented the blockbuster cancer drug Abraxane, suspects COVID metastasizes in stages like cancer, resulting in prolonged side effects. While the current vaccines are important to prevent hospitalization and death, he told Fierce Healthcare, they still allow for transmission and mutation. What is needed, he believes, is a “next generation” T-cell therapy that can kill contaminated cells, which antibodies do not do. 

Among the LCRI’s other aims is to launch a clinical trial program following a period of deep research into tissue biopsies, autopsies and biomarkers. The studies will be facilitated by sequencing technologies like spatial transcriptomics, whole-body PET imaging and single nuclei RNA sequencing. Candidate therapeutics include antivirals, immunomodulators, targeted anticoagulants and microbiome-based therapeutics.

The initiative is hoping to raise $50 million for its research and the same amount for its eventual clinical trials program. Its first study is expected to be published in approximately six months.