Collaborating to advance Long COVID research: RECOVER researchers team up across the Pacific Northwest

The Pacific Northwest (PNW) Consortium is a group of five RECOVER study sites that plays a vital role in RECOVER's mission to understand, diagnose, treat, and prevent Long COVID. By bringing together a broad network of scientists, clinicians, and study participants across Washington, Oregon, and California, the consortium can make a larger impact. Led by the Institute for Systems Biology (ISB), the consortium also includes the University of Washington, Swedish Health Services, Cedars-Sinai Medical Center, and Providence Health & Services. 

The PNW Consortium participates in several major components of the RECOVER Initiative, such as the adult observational study, including Tier 3 testing that aims to understand the detailed characteristics of individuals. The PNW Consortium also contributes to pathobiology research on the mechanisms driving Long COVID, as well as the RECOVER-VITAL clinical trial, which is testing the antiviral drug Paxlovid as a potential treatment for Long COVID.

Building an interdisciplinary network: Partners represent a wide range of expertise

Inspired by collaborations they had established during the COVID-19 pandemic, RECOVER’s PNW study site leaders saw the value of creating a regional consortium that could reflect the range of populations and clinical expertise across the Pacific Northwest. Understanding that Long COVID requires broad collaboration, they built the PNW Consortium with the goal to combine scientific expertise with real-world perspectives to better understand how long COVID affects people differently.

Led by Dr. Jim Heath, a scientist with expertise in systems biology and translational research and President of ISB in Seattle, the consortium brings together a uniquely interdisciplinary team.  Recognizing the importance of clinical leadership to fully understand the different aspects of Long COVID, Dr. Heath partnered with Dr. Jason Goldman. Dr. Goldman is an infectious disease physician based at Swedish Medical Center, a faculty member at the University of Washington and Fred Hutchinson Cancer Center, and a RECOVER site principal investigator (PI).

Other key partners bring essential perspectives to the consortium. Dr. Helen Chu, based in Seattle, is nationally recognized for her early work in detecting community spread of COVID-19. She contributes expertise in viral transmission and is a RECOVER site PI at the University of Washington School of Medicine. Dr. Kathy Tuttle, a nephrologist and clinical trialist in Spokane, expands the consortium’s reach into rural regions of Eastern Washington and provides knowledge of metabolic and kidney-related complications that intersect with Long COVID. From Southern California, Dr. Peter Chen, a pulmonologist at Cedars-Sinai, is an expert in respiratory health and helps ensure the consortium reflects the full Pacific Northwest population.

“Our consortium is kind of a microcosm of what we see across RECOVER nationally,” says Dr. Goldman. “We each bring a different specialty, but we all work together toward the same goals.”

Stronger together: Benefits of collaborating within a consortium

The leaders of the PNW Consortium have found benefits in their close collaboration. Because they are all experts in different medical and research fields, they can learn from each other’s research. “We have a lot of meetings among our RECOVER investigator group,” explains Dr. Heath, adding that twice-monthly calls among key members of the consortium provide an opportunity to compare notes and ask questions. “Information is advancing quickly.” This spirit of collaboration reflects RECOVER’s commitment to share knowledge and learn from each other’s discoveries and expertise to find answers faster.

The consortium’s sites are located in different PNW cities and provide care for different communities. This wide geographic coverage enables the consortium to connect with people from many walks of life. “Now our study enrollment more accurately represents the population of the Pacific Northwest,” Dr. Heath notes. “This is important because now we can be more confident that our results will help many people in different communities.”

Having five different study sites also improves the PNW Consortium’s access to resources. For example, not all study sites are equipped to conduct certain types of tests required by RECOVER’s adult observational study, such as medical imaging like computed tomography (CT) scans, magnetic resonance imaging (MRI), or more complex procedures like biopsies or colonoscopies. Because the organizations involved in the consortium have a wide range of specialties and site capabilities, different sites within the group can support various RECOVER tests. These tests are important because Long COVID can affect many systems in the body, and conducting the tests supports better understanding of the different ways people experience Long COVID.

Translating the science: Hosting town halls to educate community

As PNW Consortium researchers learn more about Long COVID, they share this information directly with their communities. One way they share information is through live, virtual town halls. Dr. Heath shares that these events were inspired by the work of the Chicago-based consortium RECOVER Illinois, known as ILLInet. When he saw how ILLInet proactively engages with their communities, he wanted the PNW Consortium to do something similar.

Anyone who can clearly explain RECOVER research and results is invited to speak at the town halls, including RECOVER researchers and study coordinators who work directly with study participants. “It’s not just people with MDs or PhDs speaking,” Dr. Heath says.

Many of the attendees at the town halls are people who participate in the consortium’s RECOVER studies. People with Long COVID are interested in not only how to treat their symptoms, but also in the science of Long COVID, notes Dr. Heath. The town halls also offer an opportunity for dialogue, providing researchers the chance to hear concerns from the Long COVID community. According to Dr. Heath, “As we anticipate where RECOVER studies are going, we are thinking about the questions that are the most pressing from the patient perspective.”.

He added that sharing study results helps people better understand how their experience of Long COVID, such as their symptoms, fit into scientific findings. For example, Dr. Goldman recently presented findings that revealed that about a third of people with Long COVID have evidence of the SARS-CoV-2 spike protein, or fragments of that and related proteins, in their blood.

“Diagnostics have been one of the major question marks in Long COVID,” Dr. Heath explained. “People know they’re sick, but there’s no way to measure it. The spike antigen findings really validated people—finally, there’s something showing up. As the science evolves, we improve in our ability to measure these things.”

The consortium plans to host the next town hall when initial results from RECOVER-VITAL are available.

Participants power ongoing collaboration

Drs. Heath and Goldman agree that the primary motivation for their ongoing collaboration is to help patients. “There are still a lot of people suffering in the aftermath [of the COVID-19 pandemic],” Dr. Goldman says. “We are still actively trying to address the challenges they face. The RECOVER Initiative is a fabulous mechanism to do this, both through understanding the biology from the observational study and through testing more treatments in the clinical trials.”

Dr. Heath notes that study participants are their partners in this work. “We feel a strong responsibility because of their continued engagement and efforts,” he says. “They’re volunteering their time and energy to push science forward, and they’re being patient as we work to solve a hard problem.”