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Rare Disease Campaign 2020

The need for diversity in clinical trials

Photo credit: Getty images / YakobchukOlena

Christian Rubio

Vice President of Strategic Advancement, Global Genes

Pictured above: Typically, white males are the demographic who are most commonly enrolled in clinical trials. That means that resulting medications and treatments that are developed may not be equally safe and effective for all populations.

The pandemic disrupted life – but could rare disease research be better for it? COVID-19 changed life as we know it. For rare disease patients, it opened doors.


Clinical research gives scientists the opportunity to develop life-changing – and in some cases, lifesaving – medical treatments. Unfortunately, the patients who participate in clinical research are typically not a diverse representation of the actual population; varied ethnicities and age groups are rarely fully represented.

Typically, white males are the demographic who are most commonly enrolled in clinical trials. That means that resulting medications and treatments that are developed may not be equally safe and effective for all populations. For patients with rare diseases, who are already in a very small demographic, it’s even more challenging.

Unfortunately, patients who participate in clinical research are typically not a diverse representation of the actual population. Typically, white males are the demographic who are most commonly enrolled.

An unlikely change agent

COVID-19 disrupted life around the world, but it may have also helped shine a bright spotlight on the need for diversity in clinical research – and highlighted some solutions. As COVID-19 emerged, the Food and Drug Administration quickly issued guidance so clinical research could continue, allowing more remote monitoring and decentralised or virtual trials.

“This means that more patients are able to access clinical research,” explained Christian Rubio, Vice President of Strategic Advancement at Global Genes, a rare disease patient advocacy organisation. “They can access telemedicine, virtual trials, and use mobile devices for data capture, for example. For rare disease patients and their caregivers, this can open opportunities for them to participate in clinical research that they may not have otherwise been able to.”

Learn more about intelligently using data, to communicate relevant information between patients, health care professionals and researchers.

Increased opportunities for data capture will improve diversity in representation

As the pandemic lifts, the question becomes: will the industry revert back to older models? Fortunately, this shift has focused attention more closely on the patients at the centre of the research model. Trial protocols will be expected to promote patient centricity, opening opportunities for more patients than ever before to participate in clinical research and experience the benefits of cutting-edge science and care options.

There are also more opportunities for development of technology, particularly data capture, as patients participate remotely via wearable devices or home health care providers. “The increased access will give more opportunities to wider populations,” Rubio said. “That could bring about the change we need to increase diversity and inclusion, find cures, and bring hope to more people around the world.”

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