Why should you take part in a clinical trial?
You don't need a medical degree to improve medical treatments. Consider volunteering for a clinical trial.
Clinical trials offer an opportunity to help researchers find better ways of preventing and treating diseases, improving health for all. Without clinical trial volunteers, many of the medicines and scientific discoveries we enjoy today wouldn't exist.
But one of the most important reasons to volunteer is that clinical trials are in sore need of diversity in the populations they include — they need different ages, genders and ethnic backgrounds in order to ensure new medications and treatments are being tested and work on all different people. It's great if Drug X works in middle-aged white guys, but what about African American guys, women and twentysomethings? Black and Latino participants are especially needed.
Medical research is being aided these days by artificial intelligence (AI), which makes it possible to carry out decentralized clinical trials that cast a wider net for participants in a variety of community settings. Walgreens and CVS are establishing clinical trial divisions, helping researchers find volunteers near their hundreds of locations and offering volunteers convenient, local support.
What's in it for you?
Besides the knowledge you're moving science and medicine forward, clinical trials provide an opportunity to actively participate in your own health care. By joining a trial, patients gain access to cutting-edge treatments that may not be otherwise available. In addition, participants receive close monitoring and care from health care professionals, which can lead to improved health outcomes.
That said, there are many questions you should ask before agreeing to become a volunteer. For example, you would want to know the purpose of the study, who is funding it, who approved it and how long it's expected to last. You'd want to know about any expenses involved, such as travel, and whether your insurance will be asked to cover any costs.
Other concerns are whether you might experience pain, whether there are any risks, who your care provider will be, and whether the study might affect your daily activities. The U.S. Department of Health and Human Services (www.hhs.gov) and other agencies have helpful lists of questions on their websites.
The gold standard for research studies is the “randomized, controlled trial,” or RCT. In this type of clinical trial, participants are assigned randomly to test and control groups, and you won't know which group you're in. You could be receiving a new treatment or drug, or you might not be.
Who can volunteer?
If you have a medical condition — cancer, diabetes or heart disease to name just a few — you can ask your doctor to research suitable clinical trials and make a referral. If you're accepted, you would be a “patient volunteer.”
Clinical trials also need “healthy volunteers.” This is someone with no known significant health problems who participates in research to test a new drug, device or intervention. Healthy volunteers must meet certain eligibility criteria, including sex, age, weight and medical history, depending on the design of the study.
If you're in good health, meet the eligibility criteria, agree to participate through informed consent, and have the time, the information gathered with your help could make a huge difference in others' lives, especially if you are a member of an underrepresented group.
How do you find a clinical trial?
According to CenterWatch, a centralized source for clinical trial information, there are more than 42,000 clinical trials taking place around the world. At their website (www.centerwatch.com), you can browse study topics and find clinical trials near you. It shows that about 2,200 studies are recruiting volunteers in Illinois.
Many are online, making it easy to participate. Examples of topics are “Family Members Caring for People with Dementia” and “A Study to Assess the Safety of BIIB122 Tablets” and if it can slow the worsening of early-stage Parkinson's disease in participants between the ages of 30 and 80.
Research hospitals also list their clinical trials; in our area, that includes Northwestern University, the University of Chicago and the University of Illinois Chicago.
The National Institutes of Health Clinical Center in Bethesda, Maryland, maintains a volunteer registration site, allows doctors to refer patients and lists its ongoing studies. For example, there are 27 studies currently relating to COVID-19. Visit www.cc.nih.gov.
Clinical trials and research studies advance our scientific knowledge, improve medical treatments and help us better understand the world around us — and almost anyone can play a role.
• Teri Dreher, a registered nurse, is the founder of NShore Patient Advocates (www.northshorern.com). To learn more about patient advocacy, join Teri at the first Patient Advocacy Conference, being held June 16 at Abbington Distinctive Banquets in Glen Ellyn; visit www.northshorern.com/pac for details. Daily Herald readers can also take advantage of a free 30-minute phone consultation with Teri. Call (847) 612-6684.