To revisit this article, select My Account, then View saved stories. An anti-malaria medicine called hydroxychloroquine might be a rescue drug for Covid-19—or maybe not. Or another anti-inflammatory drug, such as tocilizumab, might dampen the deadliest effects of the coronavirus. For now, there’s a lot of hope—and a controversial plug from President Donald Trump—for existing medicines that could possibly work as Covid-19 treatments, but not much data.
Fast-tracked studies will take weeks, if not months, to produce results. So in the meantime, doctors around the globe are responding by sharing information, creating registries of people with chronic diseases who have also become infected with Covid-19. Each entry is just an anecdote: the bare details of each patient's age, underlying conditions, the medicines they take regularly and for Covid-19, and how well they fare under treatment. But collectively, the registries offer a valuable picture of an evolving disease.
Gastroenterologists at the University of North Carolina Chapel Hill and the Icahn School of Medicine at Mount Sinai in New York were the first to organize a project to collect disease-specific Covid-19 data, with a focus on patients with inflammatory bowel disease (IBD) such as Crohn’s disease and colitis. After they launched the project on March 10, a global online community came together with uncanny speed. “Two and half weeks ago, we knew that the patients and caregivers and the professional community needed to have answers and needed to have them really quickly, so we could advise patients what to do as this pandemic continues to take hold,” says Michael Kappelman, a pediatric gastroenterologist at UNC and a cofounder of the SECURE-IBD. As of Monday, the registry had reports from 41 patients in 13 countries, including the US, Spain, Italy, and the United Kingdom.
Ten so far have required hospitalization for their Covid-19 symptoms. But it’s too soon to draw any conclusions from those numbers, Kappelman says. (The overall rate of hospitalization in the US, based on 4,226 Covid-19 cases analyzed by the Centers for Disease Control and Prevention, is 12 percent. ) The IBD world came together globally to support the registry, which links specialists who treat pediatric and adult patients.
“This is unprecedented in every way, shape, or form,” says Kappelman. “Never have I gone from having an idea to a research project launch in a week. Nor could I ever have imagined that was possible. ” He notes that the project involved developing a protocol; consulting with an institutional review board (independent experts who reviewed ethical issues); creating a database; crafting a marketing plan, including a study name and logo; and developing a project website.
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The registry is becoming even more powerful as it inspires the creation of other similar patient registries. The SECURE-Cirrhosis registry, which includes patients with chronic liver disease and cirrhosis and those who have had liver transplants, went live on March 20. Along with its European counterpart, that registry had logged five cases as of March 23. Physicians treating psoriasis and sickle cell disease are creating sites, and doctors in other specialty fields have expressed interest, Kappelman says.
On March 24, rheumatologists from around the world launched the Covid-19 Global Rheumatology Alliance, a coordinated effort of more than 200 rheumatologists, to track how their patients are faring with the coronavirus. The rheumatology registry may attract special attention in light of the recent focus on the anti-malaria drug hydroxychloroquine as a possible coronavirus treatment. Hydroxychloroquine (sold under the brand name Plaquenil) is a first-line treatment for lupus, a painful autoimmune disorder that affects the skin, joints, and organs. It is used to treat other autoimmune disorders, as well, such as rheumatoid arthritis.
Doctors are especially eager to study the welfare of patients with Covid-19 who have a preexisting rheumatic condition because the viral disease and auto-immune disorders share a commonality: In both, the immune system sometimes goes into overdrive, creating uncontrolled inflammation. In some severe cases of Covid-19, lung inflammation causes life-threatening damage. A patient registry can’t take the place of controlled studies that compare hydroxychloroquine with other Covid-19 treatments, but it could provide an indication of whether anti-inflammatory medicines have a protective effect. It also could provide direction about how to treat rheumatology patients who develop the infection.
With Covid-19 cases rising exponentially, speed is vital, says Paul Sufka, a social-media savvy rheumatologist from St. Paul, Minnesota, who confers with his colleagues online. “It’s really hard to sort this out in real-time, especially since this is a disease that’s only been well-recognized since mid-January,” says Sufka, a cofounder of the Covid-19 Global Rheumatology Alliance and its registry.
““Because this is such a threat to the world, we need to build as big a database as we can and as fast as we can.”
” The rheumatology registry began with conversations on Twitter on March 11. As the Twitter thread grew, the dialogue moved to a Slack channel and the rheumatologists divided themselves into committees. Some sought approval from an institutional review board, which considered the potential harm and benefits to the patients involved. They received approval from a board at UC San Francisco on March 17.
(That project approval covers the registry activities for most US clinical sites, but organizers encourage physicians to check with their local review boards. ) Others developed the website and survey form. By the time it launched, the alliance had added more than 80 organizations as partners. Most of them were from the US, Canada, and Europe, but they also included groups from South Africa, Australia, New Zealand, Turkey, and the Philippines.
The registry will collect patient data including age and location, their rheumatic or auto-immune conditions, the medications they take regularly, and any symptoms and medical interventions related to Covid-19. It will strip out personally identifying information. Read all of our coronavirus coverage here. People with rheumatic diseases are typically more susceptible to infections because their medications suppress the immune system.
Yet their autoimmune disorder may mirror some effects of Covid-19. For example, people with a form of arthritis known as adult-onset Still’s disease often have painful inflammation caused by a “cytokine storm,” a flood of proteins released by overactive immune cells that fail in their task of regulating the immune response. A similar cytokine storm can be triggered by viral infections—and has been suspected in Covid-19, says Sufka. Other registries may shed light on this, as well, as they track patients with other types of inflammatory disorders, including inflammatory bowel disease and psoriasis.
“Are patients going to fare worse because their immune system is suppressed, or is there an anti-inflammatory effect with some of these medications that will make them do better with Covid? ” Sufka asks. “I don’t have a sense of which direction it will go. ” Patients are also interested in knowing how others with their chronic condition have fared with Covid-19.
In addition to cooperating with the physician-led registries, patient groups are developing registries of their own. Global Healthy Living Foundation, a patient advocacy organization that coordinates groups such as CreakyJoints for people with arthritis, is creating the Autoimmune Covid Patient Research Network in collaboration with other patient organizations. Patients will provide information about their Covid-19 symptoms, whether they were tested or had difficulty receiving a test, if they missed a doctor’s visit or used telehealth services, whether or not they stopped taking their immune-suppressing medicines, and how they are getting information about Covid-19. They also will report on their anxieties and concerns about the coronavirus.
“There are a lot of questions patients are asking each other and that only patients are in a position to answer,” says Ben Nowell, director of Patient-Centered Research at the Global Healthy Living Foundation. As these registries ramp up, so will clinical trials. At the University of Minnesota, researchers have started enrolling people who have been exposed to Covid-19—healthcare workers and household contacts of Covid-19 patients—in a study of hydroxychloroquine for post-exposure prophylaxis, or as a way to prevent infection after being exposed. Within the first three days of enrollment, 175 people signed up.
They hope to enroll 1,500 people, including emergency room physicians and paramedics, says Matthew Pullen, an infectious disease physician working on the project. The post-exposure prophylaxis study excludes people who were already taking hydroxychloroquine for pre-existing conditions. Pullen notes that the registries provide a different way to seek information while researchers examine specific questions in clinical trials. “A registry gives you a broader answer to a broader question,” he says.
And with Covid-19, there are so many questions—and a desperate need for answers. WIRED is providing free access to stories about public health and how to protect yourself during the coronavirus pandemic. Sign up for our Coronavirus Update newsletter for the latest updates, and subscribe to support our journalism.
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