Emotional and Behavioral Health in Persons with Mental Retardation/ Developmental Disabilities: Research Challenges and Opportunities
Individuals with intellectual disability or developmental disabilities are estimated to be three to four times more likely than those in the general population to experience an emotional or behavioral disorder. Recent advances in a number of fields and disciplines—including neuroscience, genetics, psychopharmacology, and behavioral psychology—show promise for improving the treatment and lives of those with intellectual disability. Despite advances in each of these areas, intellectual disability is frequently a criterion for exclusion from research studies. Enrollment of individuals with intellectual disability in research protocols addressing emotional and behavioral disorders has been rather limited, issues of informed consent persist, and more researchers with special interest in this population are needed.
To address these issues, a two-and-a-half-day workshop was convened by the National Institute of Neurological Disorders and Stroke (NINDS), the National Institute of Child Health and Human Development (NICHD), the National Institute of Mental Health (NIMH), the Office of Rare Diseases (ORD) and the Joseph P. Kennedy Jr. Foundation.
The workshop, entitled “Emotional and Behavioral Health in Persons with Mental Retardation/Developmental Disabilities: Research Challenges and Opportunities,” drew more than 80 participants representing academic research institutions, government agencies, service providers, and consumer advocacy organizations.
The workshop was designed to address key questions that arise in the inclusion of people with intellectual disability and developmental disabilities in federally funded research in the United States. The goal was to define ways to include people with intellectual disability in research thus promoting evidencedbased treatments for this population.