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We are a team of people with and without intellectual disability. We created The ENGAGE Toolkit to help researchers responsibly enroll adults with intellectual disability into precision medicine research. The ENGAGE Toolkit can help anyone involved in the design of consent approaches and materials, or Institutional Review Board (IRB) approval.

(L-R)Project ENGAGE Team, from left to right: Front row: Bobby Carrion, Yshevia Sessoms, Rachel Romer; Middle row: Sophie Thurschwell, Shoumita Dasgupta, Kelley Shepherd, Melissa Raspa; Back row: Robert Olick, Maya Sabatello, Mark Cooley, Robert Dinerstein, Hans Anggraito, Tia Nelis, Eulena Banzer, David Mulcahy, Katherine McDonald, Micah Fialka-Feldman.

The ENGAGE Toolkit provides resources for consent to participation in precision medicine research and other health research. These resources can help inclusion in research of different populations that prefer plain language explanations of research material.  

Using the ENGAGE Toolkit you can:

• Create customized, editable consent materials for your study
• Learn about best practices for consent
• Download guidance and editable consent templates

Many adults with intellectual disability want to be in research. By including them, researchers foster engagement and autonomy, allowing individuals to be informed about their health risks—and act on them—to improve health outcomes. Their inclusion also promotes scientific rigor and, over time, will allow clinicians to make empirically-based recommendations for individually tailored prevention, diagnostic and treatment options.

The ENGAGE Toolkit does not provide legal advice. We present educated opinions only. Consult with your IRB and/or legal counsel to ensure compliance with state and territory laws, relevant court decisions, and organizational policies.