Researchers begin large-scale LGBT health study

Chuck Bednar for – @BednarChuck

Researchers from the University of California-San Francisco launched a new initiative which will use information collected from the Internet and iPhones to create the largest-ever database of health issues unique to LGBT men and women.

Called The PRIDE Study, the program was launched by UCSF nephrologist Dr. Mitchell Lunn and co-director Dr. Juno Obedin-Maliver, an obstetrician and gynecologist at the university. The study is designed to collect information about the physical, mental, and social issues that are unique to gay and transgender men and women, according to The San Francisco Chronicle.

PRIDE Study researchers said that they expect the majority of participants to sign up using a new phone app (developed using Apple’s ResearchKit tool) to share some types of health information and demographics data with scientists. Interested individuals can also sign up through the project website, which opened for registration on Thursday morning, the newspaper added.

Dr. Lunn told the Chronicle that he is hoping to recruit “tens of thousands of participants” and follow them for “decades, something like 30 years. The goal is to figure out how being a sexual or gender minority influences physical or mental health.” Dr. Lunn and Dr. Obedin-Maliver noted that health data on the LGBT community is scarce and sorely lacking.

Understanding LGBT health issues

Part of the reason for this, they explained, is due to what the Chronicle calls “a long history of distrust” dating back to the early years of the AIDS epidemic between gay and transgender men and women and the medical community as a whole. LGBT individuals, the researchers said, may not be interested in joining medical research studies, and some may blatantly refuse to become involved due to fears of discrimination or concerns that their problems will be dismissed.

Large clinical trials typically do not ask about sexual or gender orientation, and to date, there has been no attempt to conduct a large trial that includes only gay or transgendered people, they said. This has led to gaps in doctors’ understanding of LGBT health issues – something that the UCSF researchers hope to address as part of the PRIDE study.

PRIDE, which stands for Population Research in Identity and Disparities for Equality, will begin with a six- to nine-month period during which participants will be invited to suggest topics to be researchers, and how best to collect data from LGBT individuals, the newspaper said.

While this is an unusual first-step for such a project, Dr. Obedin-Maliver said it was essential to the research that gay and transgender men and women feel less like test subjects and more like they are part of the work itself. In addition, the issues that they are most interested in may not be the same as those the researchers would have thought up on their own. She said that the PRIDE team is “trying to reposition ourselves to be a service to the community.”


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