There are thousands of clinical trials researching new treatments for diseases happening at any given time. Many patients with rare diseases might be interested in taking part, but may not know how to get started. That lack of information, among other things, is one reason why clinical trials today still aren’t very diverse — even though rare disease patients most certainly are.
Professor Aisha Langford at New York University thinks a lot about how to improve diversity, equity, inclusion and accessibility in clinical trials, including those for rare diseases. She recently presented her research at the NIH’s Rare Disease Day, offering tips for both doctors and patients. One way to increase access to clinical trials and improve diversity, she says, is simple communication.
“One of the biggest reasons that patients do not participate in clinical trials is because they're never aware that a clinical trial is available,” Langford said in a recent presentation at the NIH’s Rare Disease Day event. “And they're never explicitly asked to participate.”
CSL recently launched a new website to inform patients about opportunities to participate in clinical trials.
The ASK Approach
Langford suggests a three-pronged approach for doctors that she calls A.S.K. She was inspired by the pandemic and how it highlighted the need to change people’s approach to clinical trials. She published her work in the March 2021 Journal of Health Communications, though she says it applies to clinical trials broadly.
A is for assume. Doctors should assume patients want to know all of their options.
S is for seek the council of stakeholders, which means doctors should consult with patients, their families and other clinicians.
K is for know the numbers, which means knowing which people could be eligible for a trial, how many have been approached and invited, how many have accepted and declined. Those numbers may contain important clues to patients’ lives, and reveal simple tweaks that would boost enrollment.
“Who is interested, but can't do it because the clinical hours are confined to Monday through Friday from 9 a.m. to 4p.m.?” Langford says. More people might enroll if appointments were more flexible, like being offered on evenings or weekends.
If a doctor doesn’t ask, patients can bring up the topic, too. Explore the options together and let your health care team you want to know more. And if you find a trial you think you could qualify for, discuss it with your doctor to be sure.
