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celebrating hope on international clinical trials day

clinical trials make a brighter future for patients and their loved ones possible.

international clinical trials day: celebrating hope for patients
getty
in 1747, medical doctor james lind, on board the hms salisbury, randomized 12 men with scurvy into six groups and experimented with six different treatments. each pair of men received either cider, sulphuric acid, vinegar, sea water, two oranges and one lemon, or a paste of garlic, mustard seed, dried radish root and gum myrrh. the pair that recovered most visibly, of course, was the pair that received citrus fruit. this was the start of clinical trials emerging as a way to find the best treatments, and it’s celebrated on international clinical trials day every may 20th.

how clinical trials work
clinical trials are a type of research that test health-related interventions, such as a drug, a procedure or device, or a change to someone’s diet or lifestyle. they provide research data, or evidence, which helps decide what therapies or other interventions might work best for people. they are carefully designed, usually by a group of researchers, doctors, scientists, statisticians, sponsors, and patients and/or caregivers, to make sure that risks to trial participants are minimized. clinical trials are done in phases, starting with 20 to 80 participants, and ending with thousands of participants, so researchers can learn about the drug or intervention in a gradual and safe way.

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why clinical trials are important
the goal of a clinical trial is to improve medical treatments and peoples’ health and well-being. both dr. kevin kuo, clinical investigator in toronto general hospital’s red blood cell disorders program, and pamela ajayi, sickle cell disease patient advocate and senior patient recruitment lead at iqvia, understand the importance of clinical trials.

kuo’s work at toronto general hospital’s red blood cell disorders program aims to change the lives of people living with sickle cell disease and other red blood cell disorders. sickle cell disease is an inherited disorder, with few reliable treatments, that causes crescent-shaped red blood cells which can block blood flow and prevent oxygen from reaching vital organs. kuo’s research group is conducting close to 20 different clinical trials.
“i think the most important reason we conduct clinical trials is to find an effective treatment for one condition or a set of conditions,” said dr. kuo. “i myself have a congenital red blood cell disorder and that motivates me to help those who have similar conditions. we conduct clinical trials to benefit patients, both today’s patients as well as future patients.”

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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.”

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that said, kuo acknowledges that it takes courage to join a clinical trial.
“at the end of the day, it takes someone brave to participate in a clinical trial, because you have to be an early adopter,” he says. “and with clinical trials, it is your health at stake. there are always potential side effects, but there are safeguards in place so that if a side effect occurs, we are there to monitor and treat.”
ultimately, with clinical trials, ajayi believes knowledge is power. “
you should find out as much as possible about where you are in your health journey,” she says. “if you have exhausted standard treatments, think about clinical trials.”
 
to access basic information on what clinical trials are, how they are designed, how to find them and things to know when you’re in a clinical trial or when you are finished your participation in a clinical trial, visit clinical trials ontario’s education modules.

clinical trials ontario  is a non-profit organization dedicated to strengthening the environment for conducting high-quality clinical trials, working collaboratively with research institutes, patients and the public, industry and other health innovation organizations.

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