In part 3, Emily Goff was being monitored by TrialNet after her screening results showed she was in the early stages of type 1 diabetes (T1D). Every 6 months, she would visit the Children’s Hospital of Pittsburgh for routine follow-up testing.

At one of her monitoring visits, Emily learned about a new prevention study that might be a good match for her. TrialNet is testing hydroxychloroquine to see if will prevent or delay the progression from Stage 1 (normal glucose tolerance) to Stage 2 (abnormal glucose tolerance) or Stage 3 (clinical diagnosis) T1D.

“The TrialNet research team told me about the HCQ [hydroxychloroquine] Prevention Study at my monitoring visit,” recalls Emily. “There was absolutely no hesitation for me. My son’s diagnosis was horrifying. I realize I could have lost him, and I don’t want anyone to go through that. My reaction was, I’ll help figure this out. You can use my blood."

To find out if she was eligible for the study, Emily came back to Children’s to meet with TrialNet Investigator Dorothy Becker, M.D. She also had a physical exam, additional bloodwork and completed the informed consent process.

Later at home, Emily got a call letting her know she was eligible to join the study and to set up her baseline appointment. For the HCQ Study, the baseline appointment includes bloodwork, an eye exam, and the first dose of the oral study drug. Also at this time, Emily got a 3-month supply of the study drug to take until her next visit. 

How do I join a prevention study?

If your screening results show you are in the early stages of T1D, you may be eligible to participate in a TrialNet prevention study.

We’ll help you navigate available research studies. Once we find a good match for you, we’ll work with you to make sure you understand the study, eligibility requirements, risks and benefits. All studies are different, but all are working toward one goal: find a way to stop T1D progression.

Three months and 6 months after starting the study, Emily came back to Children’s for more bloodwork and an additional supply of the study drug. After that, every 3 months she would alternate between in-person visits and answering a set of questions by email.

Emily says she feels incredibly lucky to be part of this research. “I believe my son saved my cousin’s daughter from this terrible experience [DKA], and maybe he saved me from it too.”

The HCQ Prevention Study is still enrolling. Once a study ends and findings are analyzed, we share the results with the participants, scientific community, and public. No matter the results, every study gives us important information to carefully evaluate current thinking and moves us one step closer to a future without T1D.

You can find TrialNet studies currently enrolling here. Plus, we’re always planning new studies, so be sure to stay connected!