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Diversity Gaps in U.S. Rare Disease Trials and the Inequalities in Hemophilia Clinical Studies


Harsha Rajasimha, MD, founder and executive chairman of IndoUSrare, spoke to MHE about the current disparities in diversity and ethnicity in rare disease clinical trials in the U.S., as well as what he's seeing in clinical trials for diseases like hemophilia, in specific.

Managed Healthcare Executive spoke with Harsha Rajasimha, MD, founder and executive chairman of IndoUSrare, about how the disparity in diversity and ethnicity in rare disease clinical trials in the U.S. has led to gaps in understanding diseases and conditions, jeopardizing universal health, and increasing the economic burden of healthcare.

Dr. Rajasimha also shared some examples of rare diseases that have been affected most by the lack of diversity in clinical trials, but even some strategies or initiatives that are being implemented to address the diversity gap in rare disease clinical trials.

All rare diseases or most of them are most affected by the lack of diversity represented in their clinical trials, Rajasimha said.

"If I start with ALS, or Lou Gehrig's disease, (they're) more prevalent or better diagnosed in the western world than in the rest of the world. But even here, many patients suffer from lack of diagnosis or timely diagnosis fast enough. As with most diseases, early diagnosis is so critical for better patient outcomes and prognosis," he said.

Cystic Fibrosis and ALS are examples of diseases that are more diagnosed or prevalent in the U.S. and Europe. Other examples include sickle cell disease, thalassemia, hemophilia, blood related disorders, amino acid deficiencies, or leukodystrophies.

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