Alzheimer’s nonprofits support ENACT law to improve diversity in clinical trials


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the Alzheimer Association and its advocacy affiliate, the Alzheimer’s impact movement (AIM), support recently introduced bipartisan legislation to support fairness in clinical trials in Alzheimer’s disease.

the Fairness in Neuroscience and Alzheimer’s Disease Clinical Trials Act (ENACT) of 2021 (HR 3085 / S. 1548) would amend the Public Health Service Act to improve the diversity of clinical trial participants, which is important in the development of treatment, advocates say.

“Alzheimer’s disease and other dementias disproportionately affect older blacks and Hispanic Americans than older whites,” said Carl V. Hill, PhD, responsible for Diversity, Equity and the inclusion of the association, in a Press release. “Yet too often clinical trial staff and participants have failed to include sufficient numbers of Black, Hispanic, Asian and Native Americans.”

“There is an urgent need for our nation to do more to encourage and ensure diversity in clinical trial participation, and the ENACT Act is an important step in closing this gap in our quest for health equity.”

The legislation would increase diversity in clinical studies by improving education and awareness of under-represented segments, promoting diversity among clinical trial staff, and removing or reducing barriers to trial participation.

“To ensure that future treatments and prevention are effective in all populations, trials in Alzheimer’s disease and dementia must reflect the American population,” said Robert Egge, director of public policy at the Alzheimer’s Association and CEO of AIM. “We thank the sponsors of the bill for their leadership in introducing a law that prioritizes research.”

Not only does the under-representation of clinical trials hamper scientists’ ability to understand health disparities, it also limits their awareness of how a treatment or diagnosis can affect the populations most likely to need the drugs. therapies.

“While much progress has been made in understanding the brain changes associated with Alzheimer’s disease and their impact on a person’s symptoms, we know there is still work to be done,” said Maria Carrillo , PhD, scientific director of the association. “Critically needed, we must design future trials to reflect all affected communities. It is only when the measures described in the ENACT law are implemented in the field of research that we will improve health equity.

Specifically, the legislation would provide funding to the National Institute on Aging (NIA) to increase the number of Alzheimer’s Research Centers (ADRCs) in areas where there are higher concentrations of ill populations. served.

In addition, the measure would help fund the efforts of the CCRAs and research resource centers on the aging of minorities to improve awareness and education of these populations as well as physicians. The aim is to highlight the importance of participating in clinical trials, to publicize trial opportunities and to highlight the disparate impact of Alzheimer’s disease.

The law would also direct the NIA to improve the diversity of scientists conducting Alzheimer’s disease studies and other dementia-related studies, so that they better reflect the populations they hope to recruit.

Senator Susan Collins (R-Maine) was one of the lawmakers to introduce the measure, which was referred to the House committee on energy and trade. She called Alzheimer’s disease one of the most serious and least recognized threats to public health.

“Millions of Americans and thousands of Mainers are living with the disease, which has a devastating human and financial cost,” she said. “Hispanics and African Americans are disproportionately affected by Alzheimer’s disease, but they are under-represented in current research.”

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