Participating in Research

What Does Mental Health Research Look Like?

Because mental health conditions are so complex and affect people in so many different ways, there are also many different ways that research can help advance our understanding. Many studies focus on brain science and genetics, using technology that becomes more advanced every year. Researchers also study the ways that people with mental health conditions interact with their families, with health care workers, and with their communities. These studies help design better tools for therapy and symptom management, better training programs for health care workers, and better policies for using resources in the community to ensure that people with mental health conditions can lead healthy fulfilling lives.

In addition to investigational scientific studies, clinical trials are very important in mental health research. They represent the final stage of testing new treatments, like medications or psychotherapies. In these trials, a treatment is often compared to a placebo or different treatment. A participant will usually be “randomized” to receive either the new treatment or a placebo. Because of this randomization, the participant might receive therapeutic benefit, or they might not. However, every clinical trial contributes to advancing scientific knowledge and helping people in the future. For more information on this topic, please see NIMH’s Questions & Answers document.

 

Ongoing Research Studies

Although there are countless valuable research studies and clinical trials in progress at any moment, NAMI would like to highlight a few that are particularly valuable to our members and the mental health advocacy community.

  • The All Of Us Research Program is a historic effort to gather health, environment, and genetic data from one million or more volunteers living in the United States. Rather than focusing on one population or one health condition, All Of Us will create a diverse body of information allowing researchers to conduct creative studies on mental and physical health.
  • The Harvard Brain Tissue Resource Center collects human brain tissue for research. When a person with a psychiatric or neurological condition chooses to donate brain tissue after their death, researchers can conduct incredibly valuable genetic, molecular and genetic studies.

 

Protecting Study Participants

NAMI advocates that any research involving human subjects must be in accordance with the highest scientific, medical and ethical standards. This is necessary to protect the individuals and families who contribute to scientific progress by participating in clinical trials, NAMI specifically stresses that:

  • Research subjects choose to participate in studies only after they understand the risks of being in the study as well as possible benefits. They (and, in many cases, their families) need to fully understand the study protocols as well as the risks and potential benefits of the research.
  • Researchers fully explain what protections are in place for storage, maintenance and sharing of any data collected (including genetic samples).
  • Researchers perform independent and ongoing evaluations of a research subject’s capacity to consent.
  • Institutional Review Boards include people experiencing mental illness and/or family members.
  • Individuals may withdraw from a study at any time without penalty.
  • At the end of the study—or if a person withdraws participation prematurely—effective treatment and aftercare are ensured, as is feedback on study results.
  • For genetic research, there should be clear information about the protections related to your privacy and how genetic information will be used and shared with other researchers.

Several government and private industry organizations are dedicated to protecting the rights and safety of scientific study and clinical trial volunteers. For more information, please visit their webpages.

 

Becoming a Study Participant

If you are interested in participating in a clinical trial or scientific study, make sure you can answer the following questions:

  • What’s the trial/study about?
  • What will you be asked to do?
  • What risks might you face?
  • Has an Institutional Review Board (a group of scientists, doctors, clergy and patient advocates that review and approve the detailed plan for every clinical trial) approved the study?
  • Whom do you contact with questions, concerns or problems?
  • Will you be informed about the progress and results of the study?

There are many ways to find opportunities to volunteer as a research study participant. At NIMH’s website you can view studies that are looking for participants who experience specific mental health conditions. At clinicaltrials.gov you can view a map of mental health-related studies that are currently recruiting in each state.

Remember that all participation in research is voluntary, and not considered part of your treatment plan.    ​

NAMI’s Partnership with Researchers

Although NAMI does not conduct any research studies directly, we may support studies conducted by government, academic, or private industry partners by sharing information about the study with our members or “recruiting” participants.

Researchers who have secured IRB approval for their studies may submit an application requesting this type of partnership with NAMI. 

Please contact us at research@nami.org to learn more.