Resources for Participants

  • You may have many questions about participating in a clinical trial and how it works. Clinical trials are studies in which people help doctors find ways to improve health and medical care. It is often helpful to talk to a physician, family member or friend about deciding to join a clinical trial. Our caring, compassionate staff members are experts in clinical research and will be able to help you with any questions you may have.

     

  • Before participating in a clinical trial or research study, make sure you know your rights and visit our FAQs section.

    Benefits of Participating in a Trial: 

    Choosing to volunteer for a clinical trial is an important personal decision. There are many reasons to participate in a clinical trial, which may include:

    • Being a part of finding new treatments to improve health and diagnose or prevent disease
    • Contributing to the understanding of diseases that affect people
    • Playing a critical role in the development of new therapies and medicine
    • Learning more about your own medical condition
    • Meeting people with similar medical conditions
    • Receiving compensation for your time and travel, and/or receiving an investigational drug and laboratory services, at no cost to you (compensation varies by study)

    Risks of Participating in a Trial: 

    There is always a certain level of risk involved with research studies. However, participant safety is our top priority at KCUMB. Our dedicated staff has more than 50 years combined research experience, and is nationally accredited.

    Below are some study-specific questions that you should ask before enrolling:

    • Why is the research being done?
    • What will be done to me as part of the research?
    • How will I benefit from the research?
    • Could the research hurt me?
    • What will the researcher do with my information?
    • Will the research cost me anything?
    • Who pays if I’m unexpectedly injured in the study?
    • How long will the study last?
    • What happens if I decide to leave the study early?
    • Who should I call if I have a question about the research?

    Knowing Your Rights

    You should know your rights before enrolling in a clinical trial. As a volunteer, you have the right to refuse treatment at any point in the study and remove yourself from the study, for any reason.

    Every research study conducted on human subjects in the U.S. must be reviewed, approved and monitored by an Institutional Review Board (IRB).

    Your safety and well-being is our top priority at KCUMB. Our dedicated staff has more than 50 years combined research experience, and is nationally accredited. During enrollment, you will be asked to provide information about your past and present medical history. It is important to provide a thorough and accurate account to ensure your safety. Visit the following links for more information on your rights as a patient and participant in a research study or trial:

    Good Clinical Practices
    The guidelines for Good Clinical Practice are regulated by the FDA to protect participants and research data.

    Declaration of Helsinki
    Recommendations guiding medical doctors in biomedical research involving human subjects

    Belmont Report
    Ethical principles and guidelines for the protection of human subjects of research


    HIV/AIDS: Local and Regional Resources

    St. Louis, Mo. The Washington University AIDS Clinical Trials Unit The ACTG is the largest HIV clinical trials organization in the world and plays a major role in setting standards of care for HIV infection and opportunistic diseases related to HIV/AIDS in the United States and the developed world.

    Columbia, Mo. Regional AIDS Interfaith Network (RAIN) RAIN’s expanded mission is to provide comprehensive STD, HIV and Hepatitis education, early detection and care coordination for at-risk individuals, families and communities.

    Kansas City Metro Area. Good Samaritan Project, Inc. The mission of Good Samaritan Project is to provide supportive and responsive care for a diverse community of individuals affected by HIV/AIDS and to raise awareness of HIV/AIDS through education and advocacy.

    Kansas City Metro Area. Kansas City Lesbian and Gay Community Center
    A community center for lesbians and gays is an important resource for any city. The first "gay community center" in the United States opened on April 1, 1966, in San Francisco. This was three years before the Stonewall Riots changed the landscape of gay and lesbian rights in America. In the pre-Stonewall period, it was easy to see the importance of a centralized gathering place for the LGBT community. This has not changed much in nearly 40 years. A community center's purpose is to offer resources to residents and visitors of its city.

    Kansas City Metro Area. SAVE, Inc. Through comprehensive housing solutions, SAVE, Inc., empowers those living with, or at risk for, HIV/AIDS to lead healthy stable lives with personal dignity.

    Lawrence, Kan. Douglas County AIDS Project Their mission is to provide direct client services to individuals and families infected and affected by HIV/AIDS. They also provide leadership to the community and serve as a community resource in the areas of HIV/AIDS education and prevention.

    St. Joseph, Mo. RAISE (Rural AIDS/HIV Intervention, Support and Education)
    RAISE is a Ryan White Care Act, Part C, program offering financial assistance for those who are HIV positive and have no other medical coverage for primary-care services in Northwest Missouri. Services also include referrals for behavioral health, substance abuse, dental and vision care. Coverage area includes the following counties: Atchison, Nodaway, Holt, Worth, Harrison, Mercer, Grundy, Andrew, Buchanan, Gentry, Dekalb, Daviess, Livingston, Clinton, Caldwell and Carroll. For more information, call 816-236-6477. Located at Northwest Health Services, Inc., 2303 Village Drive, St. Joseph, MO, 64506.

    Springfield, Mo. AIDS Project of the Ozarks (APO) Began in 1985 as a grass-roots organization in response to the increasing numbers of HIV/AIDS cases in Southwest Missouri. APO opened its doors thanks to the hard work of a few volunteers. Services offered today include medical care, HIV testing, prevention education and much more.

    Topeka, Kan. Topeka AIDS Project. A community-based program committed to working with HIV-infected persons and their significant loved ones, and through education minimizing the HIV infection rate.

    HIV/AIDS: National Resources: 

    AIDS Treatment Guidelines AIDSinfo is a U.S. Department of Health and Human Services (DHHS) project that offers the latest federally approved information on HIV/AIDS clinical research, treatment and prevention, and medical practice guidelines for people living with HIV/AIDS, their families and friends, health-care providers, scientists and researchers.

    National AID Treatment Advocacy Website NATAP is a New York State non-profit corporation with 501(c)3 Federal tax-exempt status. Its mission is to educate individuals about HIV and Hepatitis treatments and to advocate on the behalf of all people living with HIV/AIDS and HCV. Efforts in these areas are conducted on local, national and international levels.

    Project Inform A national, non-profit, community-based organization that remains true to its activist roots. Fiscal prudence, efficient use of resources, and dedicated staff and volunteers sustain a lean organization that cuts a wide swath with industry, government, researchers and clinicians to improve the lives of people living with HIV disease and their loved ones.

    Test Positively Aware Network TPAN empowers people living with HIV through peer-led programming, support services, information dissemination and advocacy. It provides services to the broader community to increase HIV knowledge and sensitivity and to reduce the risk of infection.

    The Body One of the Internet's most comprehensive HIV/AIDS resources. It features basic information on HIV, both prevention and treatment, as well as a rich assortment of first-person stories, podcasts and "Ask the Experts" forums on topics ranging from treatment strategies to mental health to living in a mixed-status couple. Also of note is the monthly Visual AIDS Web Gallery with art created by HIV-positive artists.