Clinical trial often exclude people with intellectual disabilities

Although largely invisible in public health surveillance and the ongoing efforts to monitor the well-being of a population, adults with intellectual disability are a health disparities population.

They experience disparities in social determinants of health—such environmental conditions as where people live and their access to education, health care, and economic opportunities that drive health outcomes—have increased risk for chronic conditions, and experience unmet health needs.

Via the development of ways to detect, diagnose, treat, and prevent diseases, clinical trials improve the health and well-being of individuals and populations. When we have representation from all segments of society, we can best ensure all people benefit from ensuing discoveries.

Persistent and widespread exclusion and underrepresentation from clinical trials means clinicians may not know whether a particular medication or treatment is safe and effective for their patients.

Full representation in clinical trials is thus a step towards health equity and is rightly encouraged, and sometimes mandated, by federal agencies funding health research. The National Institutes of Health (NIH), for example, has a dedicated program—the INCLUDE Project—to advance the inclusion of individuals with Down syndrome in clinical trials. Ethically, it’s also important to foster inclusive societies and conditions that nurture health equity.

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