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Apple iPhone app to power massive, decades-long study on LGBT health

Members of the LGBT movement hold a gay pride flag as they attend a march to mark the International Day Against Homophobia in Managua, Nicaragua, Sunday, May 17, 2015. (AP Photo/Esteban Felix)

Researchers from the University of California, San Francisco have launched an ambitious study of gay, bisexual and transgender men and women centered on that ubiquitous piece of technology many Americans carry on them at all times: the iPhone.

Called PRIDE for Population Research in Identity and Disparities for Equality, it aims to learn more about the attitudes, risk factors and outcomes for a diverse range of conditions and diseases, such as HIV/AIDS, cancer, obesity, and depression, for this group, by studying the tens of thousands of people, who, the scientists hope, will sign up.

“The main question there is, what is the relationship between being LGBTQ — or more broadly a sexual or gender minority person — and mental and physical health?” Mitchell Lunn, a nephrologist at UCSF and co-director of the PRIDE Study, told BuzzFeed News.

Recent studies have found clear disparities among sexual minority groups and straight populations, with sexual minorities often faring worse, but the information is very limited. In fact, the Centers for Disease Control didn't even start looking at sexual orientation as a data point until 2013.

“That data really matters,” Liz Margolies, executive director of the National LGBT Cancer Network in New York, told the San Francisco Chronicle. “Around cancer, we know that white women are far more likely to be diagnosed with breast cancer and black women are more likely to die from it. But we know nothing about lesbians.”

Volunteers can sign up by downloading the app to their phones and filling out an initial enrollment form with some demographic information. If they don't have an iPhone or iPad, they also can do this on their laptop. That takes about 10-15 minutes. Then they'll be asked to complete a more detailed questionnaire that is supposed to take under 30 minutes. The study is designed to be long-term (think decades), so each year participants will be asked to fill out an online questionnaire. Each step is completely voluntary, so participants can drop out at any time. Depending on their answers, some people may be invited to be part of other, more specific studies.

The PRIDE app is part of a series being rolled out by Apple and its partners called ResearchKit to shake up the world of research. There are already apps that will help researchers study heart disease, breast cancer, asthma, diabetes and Parkinson's. Tens of thousands of volunteers signed up within the first few days after the initiative was announced in March.

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