Be an Informed Participant!

Buffalo Research News readers know how important participation is to research. Equally, if not more, important is that anyone interested in participating fully understands the process before getting involved. There are lots of questions, and much to consider. That is why the University at Buffalo Clinical and Translational Science Institute has some suggestions for those who are considering joining a research study.

Here is how YOU can become an informed participant.

Do Some Research of Your Own

Before deciding to join a research study, take the time to learn about it. You should know as much as possible about the study, and can ask the research team any questions about how the study is being conducted and what your rights are as a research participant.

A great way to start gathering information is by joining the Buffalo Research Registry, which helps match members to local research, events and educational opportunities. Next, spend some time searching UB’s Participate in Research portal, which is designed to allow you to self-search to find studies that fit your interests. Another option is ResearchMatch, a free and secure national registry of people who want to get involved in a clinical trial but may not know where to start. ResearchMatch gives you access to research studies all over the country.

Understand What Health Research Actually Means

Research is a way to find out information about a topic or to answer a specific question. Often, these questions relate to improving human life, testing new medicines, helping people change their lifestyle, or learning more about diseases.

Health research helps find new ways to understand and treat health conditions. Overall, most of us have personally benefitted from research even if we don’t realize it. There are lots of different reasons why health research is conducted.

For example, studies may be seeking a better way to:

Know the Different Ways to Participate in Research

Depending on what the researchers are trying to study, different types of research might be used. As a part of a research study you may be asked to:

Recognize How Being Involved in Research Helps You — and Your Community

As a participant, you have the opportunity to be involved in research that could bring about advances in science and healthcare. Your involvement helps researchers uncover better ways to treat, prevent, diagnose, and understand different health conditions. By participating in health research, you have the ability to impact how patients are cared for and treated.

Here are a few other ways you might benefit by being involved in research:

• Using new devices, drugs, or methods first
• Gaining a better understanding of your condition or your general health
• Receiving close monitoring, support, and follow-up between regularly scheduled care visits
• Improving treatment for others with the same condition
• Increasing your interest in wellness and your engagement in the healthcare system

Learn More About Participant Safety

Participant safety and well-being is the most important concern of any research study. At the University at Buffalo, research studies undergo a thorough approval process by the Institutional Review Board (IRB). The IRB is made up of doctors, researchers, and members of the community. Its role is to make sure that each study is ethical and that the rights and welfare of all participants are protected.

Among other things, the IRB also ensures that research risks are minimized and participants’ data are collected and kept in a safe manner. Additionally, all trials that involve a drug or device must adhere to strict FDA regulations.

A research participant is a volunteer. You will never be placed in a research study without your knowledge. Before joining a study,  participants must sign a consent form stating they understand the research study and agree to participate. It is important to note that a participant may leave a study at any time without any effect on their continuing medical care.

As with any research study, there may be potential risks that you need to know about before you decide to enroll in research. Any questions you may have should be answered before you join the study.

Compile Your Questions, and Get Answers

Make note of your questions, and check out the list below to determine who to ask:

• Eligibility: For questions about a specific study and who is eligible to participate, call or email the contact person (or research coordinator) listed for that study.
• Your Rights: For questions about your rights as a current research participant, contact the UB Research Advocate at researchadvocate@buffalo.edu or (716) 888-4845.
• General Feedback: For other feedback, contact the UB Clinical and Translational Science Institute at EngageUB@buffalo.edu or (716) 829-2502.