Jefferson researchers join a CDC study to follow COVID-19 “long-haulers” and their symptoms.
Chronic fatigue, chest pain, breathlessness – these are just some of the debilitating symptoms that are persisting in COVID-19 survivors, weeks and sometimes months after onset. Scientists and doctors are scrambling to understand how the novel coronavirus wreaks such widespread and continuing havoc on some patients, who have been termed as COVID-19 “long-haulers.” A CDC-funded initiative called INSPIRE hopes to find some answers.
What Is INSPIRE?
The CDC estimated that 1 in 3 COVID-19 patients may develop prolonged illness, presenting the urgent need to address this crisis. The Center has launched INSPIRE (Innovative Support for Patients with SARS-CoV-2 Infection Registry) to follow COVID-19 patients over time, in order to better understand the range and persistence of symptoms. Jefferson Health is among eight participating institutions that together have received $13 million in funding to collect data from patients via surveys that will be compiled into a nationwide registry.
“Much of the initial research and literature on COVID-19 was on mortality rates and treatments,” says Anna Marie Chang, MD, an emergency medicine physician who is leading Jefferson’s efforts in this study. “But as more data has come out on these long-haulers, we’ve realized that COVID-19 is not just a pulmonary disease. We know very little about these long-lasting sequelae.”
How Can Patients Enroll?
Patients who are interested can visit COVID INSPIRE to see if they qualify and begin the enrollment process. To enroll at Jefferson, simply click on the Jefferson logo through the INSPIRE portal. Both English and Spanish instructions are available.
Jefferson Health, which will act as the enrolling site for the entire Philadelphia and neighboring region, plans to enroll 400 patients over the age of 18 years and who have had a COVID test done in the last 28 days. Patients who experienced symptoms but tested negative also qualify. “There is always a possibility of false negative tests, so we want to make sure we capture that data as well,” says Dr. Chang. The researchers are also hoping to capture a range in demographics, severity of illness and hospitalization.
How Is Patient Information Collected?
Enrolled patients will be sent a survey every 3 months, for 18 months in order to track long-term outcomes. Once each survey is complete, patients will receive a VISA gift card that they can use online.
The surveys are conducted through a platform called Hugo Health, which patients can opt into to connect to patient portals like ‘MyChart’ and can select the information they wish to share, for instance, subsequent COVID-19 tests, change in medications or doctor’s visits. “Unlike other research that captures data from electronic health records, this is solely controlled by what the patient allows access to,” emphasized Dr. Chang. “Importantly, you do not have to be a patient at Jefferson to enroll, and the platform is able to connect to all patient portals.”
Why Is This Study Important?
Physicians have observed a bizarre gamut of symptoms in COVID long-haulers – heart and lung damage, several neurological issues including brain inflammation, insomnia, rapid heartbeat, increased anxiety and/or depression and fluctuations in blood pressure, among others.
Dr. Chang, who herself was diagnosed almost a year ago, knows all too well the impact the virus has on the body. It took weeks before she could walk just around her house without feeling short of breath. “I’m finally feeling better mentally, and it’s taken till now for the sleep disturbances to normalize,” she recounts. “Similar to my own experience, I’ve had a few patients tell me they woke up every day at 3AM for weeks. We just don’t have enough data right now to say whether these observations are consistent or not – that’s why this study is so important.”
Dr. Chang says that the study will also provide critical insights into how we can better treat and hopefully prevent the onset of these long-term symptoms. “Right now as a physician, it feels like riding a bike that we’re building at the same time – there is such a rapid re-assessment of recommendations for a condition that we don’t necessarily know how to treat,” she says. “For patients whose quality of life has been so severely impacted, it’s really scary to hear from their doctors that we just don’t know what to do for them, and we don’t know when their symptoms will end – is it a year, two years, life-long? We just don’t know,” she says.
How Will This Study Impact Our Understanding of COVID-19?
Right now, very little if anything is known about what populations or communities are most at risk for developing long-haul symptoms.
“We’re seeing young athletes with myocarditis (heart inflammation) after COVID-19,” Dr. Chang says, “So baseline health seems to have little do with it. I thought I was healthy, and I ended up being affected quite badly.” Younger people, who initially were thought to be less at risk for severe disease, also experience lingering symptoms.
Dr. Chang says studies like INSPIRE are critical to determine risk factors or demographics that make certain populations predisposed to long-term symptoms. She says this data can also influence public health measures and provide extra precautions for particularly vulnerable communities.
“We have already lost thousands of lives, and if we don’t address the long-term impact in survivors, we could have a population that is left debilitated 20-30 years from now,” says Dr. Chang. “The more data we and our collaborators can gather, the better chance we have at preventing that.”