AIDD2Health Team Helps Make Clinical Trials More Accessible
By Drew Milne
The AIDD2HEALTH project is dedicated to accessibility for people with intellectual and developmental disabilities in medical research. Now, the AIDD2HEALTH team is proud to announce a new area of collaboration and research. The team is part of a project funded by the Southwest Center for Clinical and Translational Innovation (SW CACTI) to make clinical trials for cancer treatments accessible to all. SW CACTI is a joint venture with the University of Arizona and the University of New Mexico.
Despite having rates of cancer that are usually comparable with the general population, people with intellectual and developmental disabilities are underrepresented in cancer research. This project aims to both address the reasons for this disparity and explore methods of reducing it. In particular, it hopes to create a decision tool designed explicitly for people with IDD to make informed decisions about their healthcare, including the choice to participate – or not – in clinical trials.
The project is led by Sonoran Center affiliated faculty Dr. Julie Armin and ArtWorks director Dr. Yumi Shirai and has collaborators at The University of Arizona Cancer Center.
“We are conducting a pilot project where we engage the AIDD2HEALTH group in helping us adapt the methods of recruitment and retention in clinical trials to make them more accessible for patients with IDD,” Armin said. “The idea of clinical and translational science is you're taking science from the bench to the bedside. It's very patient focused.”
This new project centers on what is called Clinical Translational Science, or CTS. CTS examines the connections between basic laboratory science and treatments, diagnostics, and drugs used in clinical practice. Essentially, it is the “translation” of research findings into improved care for patients.
Sometimes, there can be a disconnect between researchers and the general public about what clinical trials for cancer treatments are and what the process looks like. With outreach efforts, it can feel like clinicians and potential study participants are speaking different languages. One of the goals of the CTS project is to help both groups understand each other.
“There may be misunderstandings of what cancer clinical trials are that don’t reflect the reality of what trials are offered, “ Armin said. “There are so many different types of clinical trials.”
“We've been meeting with the Cancer Center clinical trial team to review their outreach materials,” Dr. Shirai said “We discuss what a cancer clinical trial is and what it's like to participate. The AIDD2Health advocate team asks questions and provides input on the UA Cancer Center's current clinical trial materials. Direct conversations with advocates triggered helpful tips for making information clear—insights that hadn't been considered when working with the general population.”
The current phase of the process involves gathering experience data from patients and clinicians - including reviewing outreach materials for effectiveness and impact. After this segment of the project concludes in June 2026, the project team plans to use the data they’ve gathered to develop protocols and trainings for clinicians to work with research participants who are more representative of the communities they serve. This will be detailed in a proposal to the National Institutes of Health.
For more information, please contact Julie Armin at jarmin@arizona.edu.