Many research opportunities available for COVID-19 long-haulers

Dear Doctors: I am a COVID-19 long-hauler, and it has been a horrible experience. I have tinnitus, tremors and shortness of breath, and I lost my sense of smell. It’s disabling, and I am doubtful I will ever be the same. Can I assist in research in any way? What kinds of clinical trials are there?

Dear Reader: Yours is one of a number of letters we are receiving from people who have developed long-haul COVID-19. That’s one of the names for a condition in which symptoms of COVID-19 persist for weeks or months after the initial illness has passed (another name you may hear is simply long COVID-19). Your impulse to participate in research in order to help others is a generous one. When people volunteer to take part in studies, it helps to expand understanding of disease and illness and aids in identifying new avenues of care.

Medical research falls into two broad categories. One is the clinical trials you are asking about. These are studies in which human volunteers help researchers determine if a medical intervention is both effective and safe. Over the course of four separate phases, clinical trials investigate new drugs, surgical techniques, biological products, medical devices, behavioral procedures and both palliative and preventive care. The National Institutes of Health (NIH) and the National Library of Medicine maintain a searchable online database of studies into a wide range of diseases and conditions. You can find it at clinicaltrials.gov. The site includes privately and publicly funded clinical studies from around the world.

At this time, 35 studies in the U.S. are recruiting, or will soon be recruiting, volunteers for studies into long COVID-19. You can browse the various studies by filling out a simple form on the website’s front page. Be sure to click the button for “recruiting and not yet recruiting” studies, as these are the ones seeking volunteers. In the box labeled “disease or condition,” the term “long COVID” will bring you the results you want. You can further narrow your search by additional parameters, including where the study is taking place.

Elizabeth Ko, MD and Eve Glazier, MD

The other category of research is known as an observational study. It differs from a clinical trial in that the researchers do not try to prevent or cure a disease or condition. Rather, they gather and analyze information -- that’s the “observation” part of it -- to better understand the risk factors for, and the effects of, diseases or conditions. The NIH maintains a searchable database that includes observational studies. You can find it at clinicalstudies.info.nih.gov. Use the form on the front page of the website to find studies into long COVID-19 that are in the process of recruiting volunteers. You can also join a national registry of volunteers at ResearchMatch, a nonprofit program funded by the NIH. It’s located at researchmatch.org.

If you do find a study you may wish to join, use the contact information in the study description to set up an initial appointment. If you qualify for a study and decide to move forward, be sure to let your health care provider know. They can make sure the study is safe for you, and also perhaps coordinate your care during the course of the research.

To learn more about the vaccines and for the latest information visit UCLA Health's COVID-19 Vaccine Info Hub.

(Send your questions to askthedoctors@mednet.ucla.edu, or write: Ask the Doctors, c/o UCLA Health Sciences Media Relations, 10960 Wilshire Blvd., Suite 1955, Los Angeles, CA, 90024. Owing to the volume of mail, personal replies cannot be provided.)


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