What are
clinical trials?
Clinical trials (also called clinical studies or research studies) are how researchers discover new ways to treat and prevent diseases.
Everyday medicines, like ibuprofen, were first studied in clinical trials and then approved by the U.S. Food and Drug Administration (FDA) before we could buy them at the store.
In fact, the SCD treatment hydroxyurea was approved for treatment through clinical trials.
Without going through clinical trials, there are not going to be new medications and new treatment options for the sickle cell community.
Kadeem |
Sickle Cell Warrior
Sickle cell disease discoveries
These discoveries were made possible because of people with SCD who joined clinical trials:
Daily penicillin (an antibiotic) for children under age 5 with SCD can prevent serious infections, such as pneumonia
How to prevent strokes in children with SCD
Hydroxyurea to prevent SCD-related health problems and which may improve the lifespan of people with SCD
People drive new discoveries
The only way to make sure that new medicines are safe and work well for people with SCD, is for people with SCD to join clinical trials.
Many people have already volunteered to join SCD trials, but more are needed.
Many SCD trials have had to stop before researchers could learn about SCD because not enough people joined. This slows down new discoveries and can be discouraging for those who did join.
Source: Systematic Review of Interventional Sickle Cell Trials Registered in Clinicaltrials.gov on PubMed Central
Why don’t enough people join trials?
There are many reasons why some people might hesitate to join a clinical trial, such as:
Lack of awareness about trials they could join or how to find them
Concerns about safety
Worries about possible side effects of the trial treatment
Uncertainty about what to expect during a trial
Lack of trust in the healthcare system
Assuming it will take too much time
Not knowing the benefits of joining a clinical trial
Are any of these true for you or someone you know?
Why do people join clinical trials?
People join clinical trials for many reasons, such as to:
Help researchers make better treatments for future generations
Help researchers learn more about their disease
Get treatments or medicines that aren’t covered by their insurance
Get specialized, high-quality medical care from experts
Set a good example and inspire others in their community
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If we don't participate, we're never going to advance medicine.
Jacqueline |
Sickle Cell Warrior
In a recent survey of people with SCD, participants chose to join an SCD clinical trial for several reasons:
The potential to better manage their symptoms
The opportunity to try a new trial treatment that might work better for them
To learn more about SCD