What you need to know about research study participation

Let’s say you’re on social media and see an advertisement recruiting participants for a local research study. The study seems interesting, and you want to learn more. Perhaps you have a few questions or feel a bit nervous. What will they expect you to do during the study? Do you have to agree to participate right away? What if you change your mind later? What are the incentives for participation? Could the study be harmful for you in any way?

UB’s Clinical and Translational Science Institute (CTSI) works closely with researchers and research staff to help recruit study participants from the community. Veteran UB project coordinators Colleen Kilanowski and Constance “CeCe” Duerr recently tackled some frequently asked questions posed by prospective participants.

Participant rights

The rights of participants are protected throughout an entire study. To begin recruitment, studies must receive approval from an internal board focused solely on protecting participants.

“Research studies have to go through rigorous review by an Institutional Review Board (IRB) to make sure your rights as a research participant are being protected,” explains Duerr, who has worked on single and multi-site projects focusing on obesity, gambling, predictors of substance use and depression, and smoking and vaping studies for more than 25 years. “The study cannot begin until the IRB gives approval.”

Following initial approval, studies are typically reviewed by the IRB on a yearly basis. All changes made to study materials or procedures must also undergo review.

“All research staff have to complete extensive ethics training before being allowed to work with human participants,” says Duerr. Staffers are required to complete refresher trainings.

Other participant rights include:

• Education about the goals of the study.
• An understanding of all potential benefits and risks involved with participation.
• Knowledge of how information will be stored and who will have access to this information.
• Having ample time to decide whether to participate.
• Knowing how to follow-up with questions about the research and participant rights.

Duerr says it’s also important for participants to know that they “have the right to stop participating in a research study at any time with no adverse consequences.”

Deciding if a study is right for you

Deciding whether to participate in a study can be overwhelming. A good first step is to familiarize yourself with the details.

“I encourage volunteers to read up on the study from recruitment materials and speak to study staff,” says Kilanowski, who has worked on single and multi-site projects focusing on obesity, multiple sclerosis, Parkinson’s disease, and cancer and cannabis for more than 20 years. “This will give the information that you need to make a decision if a study is right for you.”

As you learn more, it is best to try to gather a clear picture of the expectations of participants. “Volunteers should understand all the tasks they are asked to do as part of the study, the risks and benefits of doing the study and the time required,” Kilanowski says. “This is the essential information to make a sound decision about participating and sticking with it.”

Duerr says another practical consideration is to ponder “whether you have the time and energy to participate before taking steps to join. If you know you will not have the time to complete all visits or requirements, do not pursue the study.”

Finally, it’s important to determine if you support the overall goal of the research study. It’s vital that all questions have been answered and that you feel comfortable with the benefits and risks of participation.

Benefits of participation

The UB experts stress that it’s important to weigh the pros and cons of joining the study. Ask yourself:

• How will you benefit from participating?
• Will this research make a positive impact on society?
• Would you recommend participating to a friend or family member?

As a research coordinator, Duerr believes the top reason members of the community should consider participation is clear. “You, the study participant, are critical. Without you, scientific advances would come much more slowly, or not at all.”

Those interested in learning more about taking part in studies at UB can visit the Participate in Research portal for a list of actively recruiting studies or sign up for the Buffalo Research Registry to be connected to future research opportunities.