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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.”

Participants create a profile and provide information such as age, ethnicity, and sexual and gender identity. They can also share information on high blood pressure, diabetes, high cholesterol and other health conditions that may lead to heart disease or stroke. Scientists have also included questions about depression, anxiety, family support and discrimination.

As of June, more than 24,000 people had signed up for the study. Starting next May, researchers can request access to data for all registered participants. Data is currently only available for early enrollees.

Access to a large pool of health data on the LGBTQ community may be a boon for scientists who want to learn more about heart disease and stroke in the more than 10 million U.S. adults who identify as LGBTQ, according to Gallup. Over the past three decades, most health studies in this population have centered on HIV/AIDS and mental illness.

Heart imaging cardiologist Sharon Reimold, M.D., of UT Southwestern Medical Center in Dallas said most of the knowledge about cardiovascular disease comes from studies on heterosexual men and women. That’s left doctors unsure about whether they’re delivering the best care to their LGBTQ patients, said Reimold.

“I think that, honestly, we’re pretty far behind,” she said of the state of cardiovascular research in LGBTQ people in the United States.

Having studied cardiovascular disease for almost 30 years, Reimold hopes the data collected from The PRIDE Study motivates more researchers to study cardiovascular disease in the LGBTQ community. For example, Reimold would like to see studies that look at the long-term effects of testosterone therapy on the hearts of transgender men.

Reimold thinks it’s “very likely” she and her peers will learn that what they’ve thought of as a single population is “really multiple populations, and they may have different short-term and long-term risks of cardiovascular diseases.”

A recent review of studies dating back to 1985 found that smoking, illegal drug use, obesity and excessive drinking are among the top risk factors for heart disease among LGBTQ people. The findings, published in the American Journal of Public Health, also showed discrimination and isolation were linked to poor health.

Korvin Bothwell is a participant of The PRIDE Study, the first long-term health study of LGBTQ persons in the United States. (Photo by Kit

Korvin Bothwell is a participant of The PRIDE Study, the first long-term health study of LGBTQ Americans. (Photo by Kit Malone)

In another study, published last month in JAMA Internal Medicine, researchers found that people who identified as transgender or gender-nonconforming were more likely to say there were in poor or fair health compared with people whose gender identity corresponds to their gender at birth.

Bothwell signed up for The PRIDE Study in June and hopes it spurs much-needed studies on the overall health of LGBTQ people, many of whom have been reluctant to share their medical records and personal details about their sexual health and habits “for a lot of really legitimate reasons.”

“Namely, it takes a lot out of people to answer questions like these,” Bothwell said.

He’s also hopeful the new data will encourage doctors to learn more about the health concerns of their LGBTQ patients – along with some of the reasons behind certain health behaviors, such as higher rates of smoking.

“Being trans is not the cause of being a smoker,” Bothwell said. “What I want is documentation — this is how the health of LGBTQ works.”