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Cancer research nonprofit looks to improve representation in clinical trials

Despite being disproportionately affected by cancer, minority groups are seldom represented in clinical trials. Just 4% of clinical trial participants are Black, 4% are Hispanic, and 15% are Asian. A new effort by nonprofit Stand Up To Cancer seeks to mitigate these disparities.

Stand Up To Cancer, created by members of the entertainment industry that had been affected by cancer, helps fund cancer clinical trials. Now, the nonprofit will require future research grant proposals to include detailed recruitment plans to include underrepresented groups. Some examples include adding clinical trial sites closer to where patients live, and getting community advocates and practitioners involved.

The nonprofit will also require proposals to address who is expected to benefit from widespread use of newly developed treatments.

“We want data from clinical trials to be applicable to all populations,” said Edith Perez, a Mayo Clinic oncologist leading the Stand Up To Cancer’s new Committee for Health Equity in Cancer Clinical Trials. “We want community members to be part of the teams. It’s not only going to be ivory tower.”

The goal is to avoid past instances, where patients most affected by a cancer aren’t represented in trials. For example, Black men have the highest rate of newly diagnosed prostate cancer cases each year, according to data from the National Cancer Institute. But participants in past prostate cancer clinical trials have been overwhelmingly white.

Stand Up To Cancer will also fund up to $ 6.4 million to research cancers that have a higher prevalence or mortality rate among underrepresented groups, thanks to a grant from Genentech. The nonprofit will put out a Request for Applications later this year.

“There’s much more work to be done to get to a better place with diversity in clinical trials, which is why we established Stand Up To Cancer’s Health Equity Initiative,” Stand Up To Cancer CEO Sung Poblete wrote in an email. “The goal of SU2C’s Health Equity Initiative is for patients of all racial and ethnic backgrounds to equally benefit from the potential of cancer treatments; and for cancer research to address remediable differences — like genetics, biology, risk, incidence, and mortality — and barriers to participation, in order to attain comparable outcomes for all racial and ethnic populations.”

Disparities in diagnosis and treatment access also play a factor in cancer outcomes, and those gaps might become even clearer during the Covid-19 pandemic. Appointments for cancer screenings, chemotherapy and other treatments were put on hold in March and April, and as clinics begin to reopen, many patients are still nervous about coming in.

“This is just potentially adding to the challenge. Many patients are calling, saying, ‘Can I get my treatment on time? I’m scared of coming into the clinic.’ There’s a lot that is unknown,” Perez said. “Because of Covid-19, many of these screening appointments were cancelled. I’m particularly worried about this because we may have an onslaught of patients with delayed diagnoses. All of us on the Health Equity Committee are paying close attention to this. We want to be strong voices in how important screening is.”

Photo credit: asiseei, Getty Images,

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