The findings highlight the differences between what adults value for themselves in clinical trial participation versus what parents find important for their children.
NOVATO, Calif., May 11, 2023 /PRNewswire/ -- The National Eczema Association (NEA) today announced the first publication from its real-world research on clinical trial awareness and preferences among eczema patients and caregivers.
Over 31 million Americans live with eczema, a chronic skin disease without a known cause or cure, and until recently, a limited number of effective therapeutic options. The current eczema therapy pipeline has exploded to include over 80 candidate treatments. However, before eczema treatments can become available to patients, they must go through a lengthy and rigorous clinical trial process to make sure they are safe and effective. Participation in clinical trials is key to much-needed advancements in eczema treatments and better care outcomes.
NEA wanted to understand what goes into the clinical trial decision-making process, and conducted a survey to see what factors are most important to the eczema community when considering whether or not to participate in a clinical trial.
This new research, published in the June 2023 issue of Contemporary Clinical Trials Communications, identifies key differences between how adult patients consider participation in clinical trials vs. how parents/caregivers decide if their child should participate in a clinical trial.
The 46-question survey was completed by 604 participants. Participants included adults with eczema and caregivers of children with eczema. The survey asked participants to rate the importance of various factors when considering clinical trial participation.
"When considering clinical trial participation for their kids, caregivers placed more importance on factors that had to do with perceived safety or risk for their child," says Jessica K. Johnson, co-author of the study and Associate Director of Community Research at NEA.
These factors might include the way a therapy is given (cream, pill, needle), if their child was asked to stop current eczema treatments, or if they will experience side effects from the test drug. These are possible barriers to enrolling kids in clinical trials.
Overall, the factor with the highest importance rating for caregivers was "having in-depth details on the purpose of the clinical trial and test drug," whereas the most important rating for adult eczema patients was "having trust in the clinical trial doctor(s)/site."
In addition, adult patients were able to care more about altruistic reasons to join a clinical trial, like helping the greater good, likely, since they were making the decision for themselves.
These findings support the value of patient-centered clinical trial participation education materials and resources that support this decision-making process. Additional findings and insights from this study are expected to be published soon.
For more information about this study and other research conducted by NEA, visit NationalEczema.org/surveys.
About the National Eczema Association
Founded in 1988, the National Eczema Association (NEA) is a 501(c)(3) nonprofit and the largest patient advocacy organization serving the over 31 million Americans who live with eczema and those who care for them. NEA provides programs and resources to elevate the diverse lived experience of eczema, and help patients and caregivers understand their disease, actively engage in their care, find strength in one another – and improve their lives. Additionally, NEA advances critical eczema research and partners with key stakeholders to ensure the patient voice is represented and valued in education, care and treatment decision-making. The eczema community is at an exciting juncture, with increased recognition of the seriousness and burden of eczema and a surge in scientific interest and development of new treatments. Bolstered by NEA's strategic plan, Blueprint 2025, we are driving toward the ultimate vision: a world without eczema. Learn more at NationalEczema.org.
SOURCE National Eczema Association
WANT YOUR COMPANY'S NEWS FEATURED ON PRNEWSWIRE.COM?
Newsrooms &
Influencers
Digital Media
Outlets
Journalists
Opted In
Share this article