NIH-funded effort may help people with intellectual disability participate in clinical studies

What

The NIH Toolbox Cognitive Battery — an assessment of cognitive functioning for adults and children participating in neuroscience research —c an be adapted to people with intellectual disabilities by modifying some test components and making accommodations for the test-takers’ disabilities, according to researchers funded by the National Institutes of Health. The adaptations ensure that the battery can be used to assess the cognitive ability of people with intellectual disabilities who have a mental age of 5 years and above, providing objective measures that could be used in a wide variety of studies.

The research team, led by David Hessl, Ph.D., of the University of California Davis Medical Center, published their findings in Neurology. The work was funded by NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) and National Center for Advancing Translational Sciences, as well as the Administration for Community Living.

The battery is administered on a computer tablet and measures memory, vocabulary, reading and executive functioning, which includes skills such as the ability to shift from one thought to another, pay attention and control impulses. The researchers adapted the battery by reducing the complexity of the instructions and including developmentally appropriate starting points. They also developed a structured manual to guide test administrators.

The researchers validated the battery and its modifications by assessing 242 people ages 6 through 25 with fragile X syndrome, Down syndrome or other disabilities. They found that the battery produced reliable and valid results for those with a mental age of 5 years and above. The authors called for additional research to adapt the battery to people with lower mental ages and to older adults with intellectual disability who may be experiencing cognitive decline or dementia.

Who

Alice Kau, Ph.D., of the NICHD Intellectual and Developmental Disabilities Branch is available for comment.

Article

Shields, R et al. Validation of the NIH Toolbox Cognitive Battery in intellectual disability. Neurology. 2020. http://dx.doi.org/10.1212/WNL.0000000000009131.

About the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD): NICHD leads research and training to understand human development, improve reproductive health, enhance the lives of children and adolescents, and optimize abilities for all. For more information, visit https://www.nichd.nih.gov.

About the National Institutes of Health (NIH): NIH, the nation's medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

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