Research at NAMI National | NAMI

NAMI is dedicated to advancing our understanding of the experiences of those impacted by mental illness, investigating the root causes of these conditions, and developing effective interventions to support individuals, families, caregivers and communities.

This work includes conducting our own national-scale survey projects as well as critical point-in-time polls on key issues. We also support research conducted by organizations whose work aligns with our mission, vision, and strategic goals. Finally, we inform the public about ongoing studies through Research Opportunity Announcements.

If you have questions about research at NAMI, please contact us at [email protected].

Original Research

Mood Disorder Survey (2021)
The cost of treatment and access to quality, affordable care, along with stigma, are major barriers to Americans seeking help for mood disorders, according to a national survey conducted by The Harris Poll on behalf of NAMI. To view the full report and download additional resources and infographics, visit the landing page here.

Polls And Reports

New Clozapine REMS Update: Impact Survey (2022)In 2021, the FDA approved changes to the Clozapine Risk Evaluation and Mitigation Strategies (REMS) Program, a system used by prescribers and pharmacies to ensure the safe, effective use of this medication. A NAMI survey assessing the impacts of these changes indicated that individuals and families now find it more difficult to obtain clozapine for treatment.

NAMI Crisis Services Focus Group Study Report (2022)
NAMI engaged individuals who had experienced a mental health crisis or loved ones who supported someone in such a crisis from 12 demographic groups. Focus group discussions concentrated on understanding barriers to crisis services, as well as perceptions and expectations related to 988.

Mental Health and Elections (2022)
A poll conducted by Ipsos on behalf of NAMI found that voters are more likely to support candidates who prioritize mental health policies, like quality mental health care and removing barriers to care.

Poll of Teen Mental Health from Teens Themselves (2022)
A poll conducted by Ipsos on behalf of NAMI finds that most teens are comfortable talking about mental health, but often don’t start the conversation. They also want schools to play a big role in their mental health, and they trust the information they get there, but feel like schools are not doing enough.

Public Opinion on 988 and Crisis Response (2022)
A poll conducted by Ipsos on behalf of NAMI found people were largely unaware of 988 ahead of its nationwide availability but overwhelmingly favor policies to help build a robust mental health crisis response system that supports people who contact the new number.

Public Opinion on 988 and Crisis Response (2021)
A poll conducted by Ipsos on behalf of NAMI found U.S. adults overwhelmingly support investment and policies to overhaul our national response to mental health crises.

Parent Perspectives Survey on Kids’ Mental Health Amid COVID-19 (2021)
A poll conducted by Ipsos on behalf of NAMI finds that an overwhelming number of parents support mental health education in schools and “mental health days” for their children. For more information and links to resources on youth mental health, visit the landing page here.

NAMI-Supported Studies

Accelerating Medicines Partnership for Schizophrenia (AMP-SCZ)
In 2020, NAMI officially joined the Accelerating Medicines Partnership for Schizophrenia (AMP-SCZ).  AMP-SCZ is a collaborative effort of the National Institutes of Health, the U.S. Food and Drug Administration, non-profit organizations, and private organizations to develop measures that further define early stages of risk and predict the likelihood of progression to psychosis and other outcomes. Such tools will enable clinical trials to test new treatments that may prevent the onset of psychosis. The importance of this program and NAMI’s role in its creation are highlighted in an editorial written by NAMI National Board member Carlos A. Larrauri and in further resources available here.

Schizophrenia Spectrum Biomarkers Consortium (SSBC)

The Schizophrenia Spectrum Biomarkers Consortium (SSBC) is an international collaboration of researchers working to identify biomarkers – such as proteins, hormones, and brain activity patterns – for schizophrenia and related illnesses. Over the course of several years, the SSBC will work with research participants to better understand the biology of these conditions, ultimately leading to better diagnosis and treatment. NAMI has been a member of SSBC since its inception in 2018.

Research Opportunity Announcements

NAMI regularly shares “Research Opportunity Announcements” with our grassroots leaders to make them aware of both clinical trials and social sciences research relevant to the mental health community. Promoted research may be conducted by government, academic or private industry partners, or any other entity that has secured IRB approval/exemption for their study. After initial distribution by NAMI National, state and local NAMI leaders may share the announcement with their networks as appropriate.

NAMI also assists with external research in a consulting role, making sure that mental health conditions are represented accurately and appropriately and that participants are valued and respected throughout the duration of the project. When acting as a consultant, NAMI may provide the following:

  • Material/content review
  • Development of research/data collection documents
  • Engaging of individual and family member perspectives

NAMI takes its involvement in research very seriously. All studies selected for promotion or consulting have been thoroughly reviewed to ensure the safety of those involved.

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

Please contact us at [email protected] to learn more.

NAMI HelpLine is available M-F, 10 a.m. – 10 p.m. ET. Call 800-950-6264,
text “helpline” to 62640, or chat online. In a crisis, call or text 988 (24/7).