Major research grants were announced in late September by the U.S. National Institutes of Health (NIH) that will focus on family needs related to Down syndrome and the opioid crisis.

Approximately $35 million will go toward the Investigation of Co-occurring Conditions Across the Lifespan to Understand Down Syndrome (INCLUDE) project. INCLUDE aims to investigate conditions affecting people with Down syndrome through existing clinical trials, as well as through transformative basic science studies. As part of the INCLUDE initiative, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) is expanding its Pediatric Trials Network to ensure that medications commonly used in children with Down syndrome are specifically tailored to their needs.

Also in September, $945 million in total funding was announced through the Helping to End Addiction Long-term SM (HEAL) initiative. Though the majority of HEAL funding will go toward research to reduce opioid misuse and improve pain management practices in adults, the initiative supports Advancing Clinical Trials in Neonatal Opioid Withdrawal Syndrome (ACT NOW), a research effort led by NICHD to inform treatment guidelines for the clinical care of infants exposed to opioids in the womb. There is currently no standard of care for newborns who undergo withdrawal symptoms, and ACT NOW will evaluate several approaches to treat these infants and evaluate their neurodevelopment.

Learn more