pamela ajayi, patient advocate for individuals living with sickle cell disease, has been a loyal volunteer of the
sickle cell awareness group of ontario (scago)
since 2008 and has promoted patient voices and needs with regulators, researchers, pharma and industry professionals.
“clinical trials represent hope for a brighter future for patients of various communities, and for that reason, clinical research is something i am passionate about,” she says.
advice for people interested in participating in a clinical trial
both dr. kuo and pamela ajayi’s most important piece of advice for those interested in clinical trials is to ask a lot of questions.
“if you do not understand something in the trial, it means someone else does not understand it either, and it is our job to explain it to you,” says kuo.
for ajavi, taking the time you need to talk things through is important. “don’t rush to join a trial,” she says. “ensure you are informed on what will be expected of you, including number of visits, trial duration, et cetera.”
kuo also says people should know that while there are risks, clinical trials are safe.
“in my opinion, clinical trials are often safer than the standard of care because there is a higher level of scrutiny,” he says. “we have more in-depth and more frequent interactions with patients participating in clinical trials than other patients.”