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.
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.