Written by Clinical Trial Education Volunteer Alecia Wesner, with contributions from Clinical Research Nurse Jeniece Ilkowitz, BSN, RN, MA, CDCES
Clinical trials are vital for advancing treatments, improving disease management, and ultimately finding a cure for type 1 diabetes (T1D). Every advancement in care, whether it’s a new device, therapy, or disease-modifying treatment, starts with a trial and the people who step up to participate.
Unfortunately, many trials are delayed or never completed due to low or slow enrollment. These delays increase costs and, more importantly, postpone progress that could benefit everyone living with T1D.
So why don’t more people join clinical trials? Misconceptions that often pose barriers to participation so let’s address a few of them:
Reality: Participation is always voluntary. You have the right to stop participating or participate in less at any time without penalty or loss of access to standard treatment options.
Reality: There are a variety of clinical trials for newly diagnosed individuals because that stage of T1D is one that researchers want to prolong. While some trials focus on those recently diagnosed, there are usually some open to people at various stages of T1D. One reason I advocate for T1D early detection testing is to give people the chance to participate in newly diagnosed trials. Not only can this information help someone at risk of developing T1D to have a softer landing into life with T1D but also can give them some time to see if there are clinical trial options in which they might be a candidate.
Reality: While some trials include placebo arms, many add investigational therapies on top of standard care and provide a larger care team, more education and knowledge and more support. Placebos however are critical for scientifically assessing a treatment’s effectiveness, and all study arms contribute to the integrity and impact of the research, moving science forward. Many trials do have a higher number of subjects who receive treatment versus placebo, so your chance is higher to receive the investigational drug.
Reality: Many trials are designed with flexibility in mind, including both in-person and remote check-ins. The research team will always review with you the time commitment and expectations before you enroll, so you can make an informed decision.
Reality: Participants often gain access to cutting-edge therapies and benefit from additional medical monitoring and insights from some of the top experts in the field. Even if the investigational treatment doesn’t work for you directly, your participation helps move science forward. As someone who was an outlier in a clinical trial, I know how crucial every participant’s role is in driving progress for all of us.
Final Thoughts
Joining a clinical trial is a personal decision—but it’s also a powerful way to help build a community of informed, empowered participants who are pushing research forward.
If you’re curious about which trials may be a good fit for you, visit our local clinical trial listing page here: Participate in a Clinical Trial – Greater New York Metro Chapter
For more general information on clinical trials and screening resources, visit the national Breakthrough T1D page here: Type 1 Diabetes Clinical Trials – Breakthrough T1D
Thank you to Alecia Wesner for sharing her experience as a participant and advocate, and to Jenice for contributing her insights from the clinical research side. Together, their voices help build a clearer picture of the journey behind every T1D breakthrough.
