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    Understanding Why People
    Participate in Clinical Research

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    Clinical research is at the heart of medicine. Every approved medicine and many medical advances today were made possible because participants chose to take part in clinical research.

    The choice to participate is a personal decision that is completely yours to make. It’s natural to feel hopeful, unsure, or overwhelmed when considering clinical research. Understanding why someone would choose to participate can help you make your own decision.

    Some of the reasons why people participate in clinical research studies: 

    Participation in a clinical research study may contribute to research that could improve understanding of the condition and inform future treatment approaches for people affected by it.

    Clinical research studies allow participants to contribute information that researchers use to better understand diseases, treatments, and health outcomes.

    For some individuals living with rare, severe, or chronic conditions, a sense of shared experience and a desire to benefit others in similar circumstances are factors that may motivate participation in clinical research.

    For people living with a serious autoimmune condition or chronic illness, participation in a clinical research study may provide an opportunity to receive an investigational study drug that is being evaluated before it becomes widely available.

    While there are benefits to participating in clinical research studies, it is also important to understand the risks involved as well. Making an informed decision means understanding both.

    Risks to taking part in clinical research studies include:​
    • Potential side effects: There may be unpleasant, serious, or even life-threatening effects of the  investigational study drug​.
    • Treatment may not work: It’s important to remember that investigational study drugs are still being studied, and they may or may not work better than existing care. This uncertainty is part of what the clinical research  study is trying to answer.
    • Time requirement: The study may require more time and attention than standard treatment would, including visits to the study site, more blood tests, more procedures, hospital stays, or a complex treatment routine.

    Why Your Participation Matters

    Clinical research studies rely on participant involvement to generate findings that may help inform the development of new treatments and healthcare practices. Including participants with diverse backgrounds and experiences allows researchers to examine how investigational treatments may affect different populations.

    The evaluation of new treatments relies on individuals who volunteer to take part in clinical research studies. Participant contributions provide researchers with the data needed to assess whether investigational treatments are safe and effective.

    Clinical research conducted today contributes to the body of evidence that may inform treatment options for future generations. Individuals living with a serious illness who participate in studies add to the collective understanding of how investigational treatments may affect others with the same condition.

    Making the Choice That is Right for You

    It is normal to experience a range of feelings when deciding to participate in a clinical research study. Taking time to weigh the benefits and risks involved before participating is an important part of that decision.

    Questions to Consider

    Deciding to participate in a clinical research study is a very personal process with no right or wrong answer. Talking with your healthcare provider and the clinical study teams can be helpful before making any decisions. Some questions to consider asking yourself:

    1. Why do I want to participate? 
    2. Why don’t I want to participate?
    3. What would I like to get out of participating?
    4. Do I understand the risks?
    5. Do I have enough time to participate?
    6. Would I have to give anything up in order to  participate? If so, am I OK with that?
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    Thinking through your responses to questions can help you choose what feels most comfortable and manageable to you.

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    Clinical Research Participation is a Personal Choice

    The reasons for participating in clinical research can be as varied as people themselves.

    Whatever your reason, deciding to join a clinical  research study is uniquely personal to you. Taking time to understand your motivations and what participation involves can help determine if it is the right choice for you. Those who do choose to participate become part of something larger: the ongoing effort to better understand diseases and make them more treatable.

    What Does It Mean to be Part of a Clinical Research Study?

    Clinical research studies help researchers learn more about potential new medicines and treatments for people living with different health conditions, including autoimmune diseases.

     

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