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Protection of Human Subjects in Research

NAMI’s Advocacy Goals and Strategies

NAMI seeks to strengthen the true partnership between consumers and families on the one hand, and researchers, on the other, by:

  • Advocating for regulation and/or legislation that will put into practice NAMI’s policies.
  • Developing an IRB training program for consumers and families and an informed consent video to be widely disseminated to all researchers and potential subjects in research.
  • Working with NIMH and the FDA to enhance scrutiny and protections involved in research involving medication discontinuation/delay and symptom challenge; and
  • Researching the views of consumers and family members as they are involved in research and the impact of different policies and practices on consumer experience in research.

For more information about NAMI’s activities on this issue, please call Laura Lee Hall, Ph.D., at 703-516-7107 or Ron Honberg at 703-524-7600.

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