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Like everyone else in the U.S., the researchers at the Center for Rehabilitation Outcomes Research (CROR) in Chicago have had their lives upended by the coronavirus pandemic. They started working from home and holding their staff meetings via Zoom. But unlike many people who kept doing the same job, the CROR staff had to change some fundamental ways they work. There was no more showing up in patients¡¯ hospital rooms at the Shirley Ryan ÌÀÍ·Ìõapp and asking them to enroll in a study. There were no more focus groups to gather input from people with disabilities, their care givers, or clinicians and rehabilitation therapists. A lot of projects had to be slowed down or put on hold.

¡°The days are more scheduled and longer but I feel like I¡¯m a little less efficient,¡± says CROR Director Allen Heinemann, PhD. ¡°Some projects will be delayed because all outpatient physical therapy was shut down and we couldn¡¯t recruit. We will resume recruiting but some of the folks we¡¯ve missed are gone. And we¡¯ve lost part of the window of funding.¡±

The grants from government agencies that fund some of CROR¡¯s many projects come with time limits, often a five-year window. If the work isn¡¯t completed within that time, the researchers may ask for a ¡°no-cost¡± extension from the funder. That allows them to continue the work but without any extra money to pay salaries or expenses.  So far, CROR has been able to avoid furloughing any of its 17 staffers. ¡°We¡¯ve found other work for them to do,¡± Heinemann says.

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CROR Clinical Research Scientist Linda Ehrlich-Jones, Ph.D., RN, is luckier than some researchers. She has two projects that had moved beyond the data collection phase when the pandemic hit so she can focus on analyzing the data and writing papers about the results. But the shutdown has thrown a wrench into a study she is doing with Rosalind Ramsey-Goldman, M.D., DrPH, a rheumatologist at Northwestern Medicine. The study is looking at whether a counseling style known as motivational interviewing (a technique to help people change their behavior) can encourage patients with lupus to increase their physical activity level and eat healthier foods. The hope is that those changes will decrease the participants¡¯ fatigue, a major symptom of lupus, an auto-immune disease that can cause organ damage. The study¡¯s control group receives information about lupus but no motivational interviewing counseling. The way the study was originally designed, the group receiving the motivational interviewing would have met with their counselor in person during the first session. Now that¡¯s been changed to a remote session, which Ehrlich-Jones worries may decrease the participants¡¯ bond with the counselors and the effectiveness of the intervention.

The biggest obstacle has arisen around the blood tests that were going to be used to track changes in the disease. Because people with lupus have compromised immune systems, it wouldn¡¯t be safe to have them come to Northwestern Memorial Hospital for the blood draws during the pandemic. Instead, the researchers worked out a way for participants to go to Northwestern-affiliated sites for the blood draws, which could be paid for out of the research budget. ¡°We came up with a lot of alternatives that were innovative,¡± says Ehrlich-Jones. For example, Ramsey-Goldman is conducting telehealth visits so she can see participants virtually and note whether they have rashes, arthritis (swollen, reddened joints that are difficult to move), or trouble speaking, which could indicate shortness of breath.

For now, the study is pushing ahead with far fewer participants than hoped. The original goal is still 236 participants, but only 25 had signed up at the time that Northwestern shut down all recruiting for medical studies in March.

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Sam Curry, a research assistant at CROR, also has felt the pandemic¡¯s effect on his work. Curry is working to recruit patients for a study ¡°comparing the treatment goals and outcomes of patients with spinal cord injury who receive robotic exoskeleton therapy versus conventional therapy.¡± Before COVID-19, Curry would arrange with a physical therapist to meet a patient before or after their therapy session. He would explain the study to them and often get their consent to be part of it in-person. Curry also could usually complete the intake interview on the spot. ¡°Typically, we want to catch patients in their first couple of therapy sessions. We don¡¯t want them to be too far along,¡± he says.

But when the Shirley Ryan ÌÀÍ·Ìõapp stopped all outpatient treatment in March and April, Curry could no longer recruit outpatients in-person. The study¡¯s goal was to evaluate 180 patients receiving conventional therapy and 120 exoskeleton patients. ¡°We¡¯re still struggling to get half of that,¡± Curry says. The way the study was written, patients who hadn¡¯t received treatment in 45 days would be considered discharged. As a result, some participants that were recently enrolled had to be administered the discharge survey despite having only undergone a few therapy sessions. In the meantime, Curry is filling his time doing phone follow-up calls with spinal cord injury patients for a different spinal cord injury study, but he misses the personal contact that he had with patients before the pandemic: ¡°I find that to be one of the most rewarding parts of the job¡ªtalking to people and making a personal connection, getting to know them a bit. It¡¯s much nicer to see someone¡¯s face when you talk to them.¡±