AU School of Public Health researcher awarded $1.3 million for IDD study

July 23, 2026 - 17:59

A researcher from the American University School of Public Health has been awarded a $1.3 million grant to tackle a persistent problem in medical science: the exclusion of people with intellectual and developmental disabilities from research studies.

The four-year project, led by Dr. Emily Hotez, aims to change how researchers design and conduct studies involving individuals with IDD, which includes conditions like autism, Down syndrome, and cerebral palsy. Historically, this population has been left out of clinical trials and public health surveys due to logistical barriers, communication challenges, or assumptions that they cannot provide meaningful input. This exclusion means treatments and policies are often based on data that does not represent them.

The grant will fund the development of new tools and training modules for research teams. The goal is to shift from a model where people with IDD are simply subjects to one where they are active partners in the research process. This includes adapting consent forms, using accessible language, and involving self-advocates in study design.

Hotez noted that including these voices is not just about fairness. It leads to better science. Without their participation, researchers miss critical insights into health disparities, medication effectiveness, and quality of life. The project will also create a national network of researchers and community organizations to share best practices.

The funding comes from the National Institutes of Health. The work is expected to produce open-access resources that any university or health agency can use.