Participate in a Research Study
Participating in Research Studies
If you have a mental health condition, taking part in a clinical trial is one way to advance treatment and research for people living today, and in the future. Click here for a current listing of available trials or visit clinicaltrials.gov. Make sure to familiarize yourself about the protection of research volunteers, too.
Below are some research projects that require the participation of individuals with mental illnesses and, occasionally, their family members. For each of the studies listed below, we have received verification from the lead scientist on the study that an institutional review board (IRB) has approved the study. Nonetheless, if you are interested in participating in one of these studies, make sure that you can answer the following questions for yourself:
- What is the study about?
- What will you be asked to do in the study?
- What risks might you face?
- Who do you contact with questions, concerns, or problems?
- How will you be kept informed about the progress and results of the study?
You should feel that you fully understand the project and your role in it before signing an informed consent document. Do not participate in any studies you do not fully understand. Remember that all participation in research is voluntary and is not part of your treatment.
NAMI members strongly support severe mental illness research, including research involving human subjects, as this is the basis for all future advances in treatment. However, research involving human subjects must be in accord with the highest scientific, medical, and ethical standards and must protect and honor the individuals and families who make this contribution to scientific progress. Specifically, NAMI demands that: 1) research subjects give truly informed consent and that they and their families fully understand the protocols and risks and benefits of the research; 2) researchers perform independent and ongoing evaluations of research-subject capacity to consent; 3) IRBs include consumers and family members: 4) consumers may withdraw from a study at any time without penalty; 5) at the end of the study, or if a consumer terminates participation prematurely, ongoing effective treatment and aftercare are ensured as is feedback on the study results.
Below are a list of resources that provide information about the protection of research volunteers.
Office for Human Research Protection: The federal office that oversees the protection of human research volunteers.
National Institutes of Health Bioethics Resources: A variety of resources made available by the NIH related to research ethics, both within the NIH and outside the NIH.
Public Responsibility in Medicine and Research (PRIM&R): A private, not-for-profit organization providing educational materials on research ethics.
Association for the Accreditation of Human Research Protection Programs, Inc.: A recently formed organization to accredit IRBs.
Partnership for Human Research Protection, Inc.: A recently formed collaborative to accredit IRBs.
Responsible Research: A Systems Approach to Protecting Research Participants: Landmark report published by the Institute of Medicine in 2002.