First long-term health study of LGBTQ underway in U.S.

Korvin Bothwell searched for health information about transgender people years before he made his transition in 2013, but it was scant. There wasn’t much more available after his transition when he wanted to learn more about the side effects of testosterone.

“I had a lot of questions,” said the 39-year-old businessman who owns a store that sells roller derby skates and related gear in Indianapolis.

That experience motivated him to sign up for The PRIDE Study, the first long-term health study of LGBTQ (lesbian, gay, bisexual, transgender, queer) adults in the United States. Initially launched in 2015, researchers in May expanded the enrollment options, now allowing people to register online and through an app available on all smartphones.

Study co-director Mitchell R. Lunn, M.D., said it was important to make the study accessible to more people to have “more diversity in terms of ethnicity, in terms of economic status, in terms of education level.”

The project is different from other population health studies in that patients won’t have to go to clinics for periodic checkups. Plus, the online and mobile platform allows as many people as possible to participate — and protects the privacy of participants, said Lunn, an assistant professor in the division of nephrology in the department of medicine at the University of California, San Francisco.

“If you’re a trans woman of color who lives in rural Mississippi,” said Lunn, “you may not feel safe and comfortable going into a local or nearby academic medical center to participate in a study because you may not be out about certain aspects of your identity.”