Frequently Asked Questions

General Study Information

What is The PRIDE Study?

The PRIDE Study is a national, online, prospective, longitudinal cohort study of sexual and gender minority (SGM) individuals, including members of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities. The central question of The PRIDE Study is “What is the relationship between being SGM and health?” Because this is a longitudinal cohort study, we plan to partner with people for decades to understand how LGBTQ health changes over time.

What does PRIDE stand for?

PRIDE stands for “Population Research in Identity and Disparities for Equality.”

When did The PRIDE Study begin?

The PRIDE Study launched on June 25, 2015 with Phase I – the “community listening” phase. We anticipate launching Phase II – the prospective longitudinal cohort study – in 2017. The community’s responses from Phase I are helping us design Phase II. By getting involved now, YOU can help shape the study going forward!

What is a longitudinal study?

A longitudinal study is a research study that collects health information about the same group of people over time. In The PRIDE Study, this allows healthcare providers to understand how lesbian, gay, bisexual, transgender, queer (LGBTQ), and other sexual and gender minority (SGM) people’s health, lives, thoughts, and experiences change over time. With this information, we can better understand how sexual orientation and gender identity affects health and how to promote health and combat disease.

What is the timeline for The PRIDE Study?

The PRIDE Study is a long-term research study that will partner with LGBTQ and other sexual and gender minority people over decades.

I’ve heard there are “phases” of The PRIDE Study. What are they?

The PRIDE Study is a long-term study that aims to partner with LGBTQ people to understand the relationship between being a sexual or gender minority and health. The PRIDE Study is divided into two phases to ensure that LGBTQ community members are part of the design of this long-term study. Phase I – the “community listening” phase – began on June 25, 2015. In Phase I, we invite LGBTQ people to share their health concerns and research priorities to inform Phase II. Phase II is a prospective longitudinal cohort study, which will last for decades. We expect to launch Phase II in 2017. Phase II will be available on a dynamic web platform so that it is accessible by all web-enabled devices including smartphones, tablets, computers, etc. Phase II participation will include baseline questionnaires as well as annual questionnaires.

Who is running The PRIDE Study?

The PRIDE Study is run by a team doctors and researchers at the University of California, San Francisco but heavily influenced by a growing network of community partners through our participant powered research network called PRIDEnet, which you can learn more about here. You can learn more about The PRIDE Study and PRIDEnet team members here. A few dedicated members of the LGBTQ and ally communities have made this study possible, but it’s YOUR support that makes The PRIDE Study a success!

How is the community involved in The PRIDE Study?

The PRIDE Study is committed to involving the LGBTQ and SGM community in the research process from end-to-end. For this reason, we have built mechanisms for LGBTQ/SGM participants to propose and prioritize research questions. Additionally, we are thrilled to announce that we are building PRIDEnet: a participant-powered research network (PPRN) of sexual and gender minority individuals for the purpose of intentionally engaging community members in the research process. As part of PRIDEnet, we are involved with almost 50 organizations around the county. PRIDEnet is being made possible by funding from the Patient-Centered Outcomes Research Institute (PCORI). More information about PRIDEnet is available here.

What is PRIDEnet?

PRIDEnet is a participant-powered research network (PPRN) that is designed to engage sexual and gender minority (SGM) individuals in the research process from end-to-end. PRIDEnet will help make sure that diverse voices from the LGBTQ and SGM community are involved in creating, recruiting, analyzing, and disseminating information from The PRIDE Study. Currently, PRIDEnet is involved with almost 50 organizations around the country. More information about PRIDEnet is available here. If you would like to join PRIDEnet as a partner organization, please contact us at: pridestudy@ucsf.edu.

How is the study funded?

Donations from individuals and organizations make The PRIDE Study possible. We have also received funding from the University of California, San Francisco Resource Allocation Program and the Patient-Centered Outcomes Research Institute (PCORI).

If you or your organization are interested in supporting The PRIDE Study, you can make a tax deductible donation now via The UCSF Foundation or contact us for more information about monetary and non-monetary ways that you or your organization can contribute.

Security

If I participate in the study, are my responses secure and confidential?

Yes! As doctors and research scientists, we understand that information about your life and health is personal, and it is our priority to keep the information you share private and secure. All communications between you and The PRIDE Study are encrypted, and our data centers are secured by electronic and physical means. All our systems meet the University of California, San Francisco guidelines. All studies are reviewed by the University of California, San Francisco Human Research Protection Program.

Information Collection

How is information collected for The PRIDE Study?

We want participating to be easy! Currently you can participate through our iPhone app which you can download through the Apple App Store. In 2017, we will launch a dynamic web-based platform that you can access from any computer, tablet, or smartphone.

If you don’t currently have an iPhone but want us to let you know when the web platform is available, please sign up here. We plan to have in-person, telephone, and U.S. mail options for participation as well. If you have questions about modes of participation, please send an e-mail to support@pridestudy.org or give us a call at 1-855-421-9991 (toll free).

Participating in the Study

What does joining the study entail? How much time will I need to commit to be part of the study?

We want enrollment and participation to be easy! The initial enrollment process takes approximately 10-15 minutes.

For Phase I (iPhone app), we ask you to please complete a demographic survey as well as surveys (released mid-2016) that ask about your physical, mental, and social health. In addition, you can participate in the Community Forum, where you can propose and prioritize research questions and read other people’s ideas. You can spend as much or as little time as you would like on the Community Forum. We ask you to share your thoughts with us to help us build the study.

When we begin longitudinal data collection (Phase II) in 2017, you will be invited to complete our annual health questionnaire, which is designed to take less than 30 minutes. Some participants may also be invited to take part in additional online studies. You will receive a health questionnaire every year so we can understand how your health is changing over time.

Participation in The PRIDE Study over time makes the biggest impact by giving doctors, scientists, and policy makers information that we can use to promote health and combat disease.

If I change my mind or am no longer able to participate, what should I do?

Like all research studies, you can choose to stop participating in a study at any time. We hope that you’ll stay in the study for decades, so we can continue to learn about you as your life changes! If you have a specific concern about the study, please let us know because we want to make sure we keep improving! If you are currently enrolled in The PRIDE Study through the iPhone app and wish to leave the study, you can do so by going to your “Profile” and tapping on “Leave Study.”

How will The PRIDE Study be in touch with me?

During Phase I (iPhone app), we will be communicating with you via the app and via e-mail.

When we begin longitudinal data collection (Phase II) in 2017, you will be able to let us know your preferred communication method(s) including e-mail, text message, telephone, and U.S. mail (snail mail).

Will the results of the study be shared? With whom? How?

When available, results from The PRIDE Study will be shared directly with you and the medical community through publications and medical conferences. Relevant resources will also be made available to everyone through The PRIDE Study website. Identifying information about you will never be shared; the data resulting from The PRIDE Study will only be shared in aggregate.

I downloaded the iPhone app. What are the next steps?

After downloading the app, you can preview features of the app and tap “Get Started” to join. You will go through a walkthrough describing the purpose of the app and a comprehension quiz to make sure you understand the research, how it will be conducted, how your data will be protected and used, etc. Once you have completed the consent process, you can start completing “Activities” which include surveys on physical, mental, and social health. Keep coming back! Other activities will be posted as they are developed. By completing these “Activities,” you will help us design long-term studies.

A key activity is the “Demographics Survey.” You can also review current demographics of everyone participating in the study through the “Dashboard.” Additionally, once you have completed your demographics survey, you will be able to see the number of participants that share the same characteristics as you in the study. Additionally, you can review, comment on, and propose research topics in the “Community” section. We encourage you to propose or comment on as many topics as are relevant to you and tag them by subject, age, and identity so others with similar interests can read and respond to your posts.

How many surveys have you released?

We released the “Demographics” survey on June 25, 2015. Surveys on physical health, mental health, and social health will be released in July 2016. Make sure you keep the app up to date, so you can share your experiences and help advance LGBTQ health.

Who is eligible to participate?

The study is open to all LGBTQ or another sexual or gender minority (SGM) adults aged 18 years or older that currently live in the United States. If that is you, please join the study. Help us spread the word, donate, or simply join our mailing list to stay informed.

Is The PRIDE Study only being conducted on the iPhone?

Currently yes. We are designing a dynamic web environment so it can be accessible on any device in 2017. Please sign up here to be contacted when the web-based version is available.

Can I participate in the study through my iPad?

No. Participation is currently limited to iPhones operating on iOS 8.0 or later. This is because The PRIDE Study iOS app uses activity and geolocation data collected by iPhone. Phase II (the longitudinal study) will be available by a dynamic web environment in 2017 that will be accessible on any device. Please sign up here to be contacted when the web-based version is available.

Can people without an iPhone participate?

Not currently. We are working hard to develop a web-based version of the study. Please sign up here to be contacted when the web-based version is available.

Additionally, we will have options for people without computer access to participate in-person (San Francisco), by mail, or by telephone.

Finally, you can help the efforts by spreading the word about the study, by volunteering time, and by donating to help us expand efforts to more participants.

Are you going to make the iPhone App available to other (earlier versions) of iPhone?

No. The PRIDE Study app was developed using an open-source platform called ResearchKit that was designed by Apple. The goal of ResearchKit was to allow researchers to quickly design apps for iPhone-based clinical research studies. Unfortunately, ResearchKit only works with iOS version 8.0 or greater. We plan to release a web-based version in 2017 that will be available to anyone with Internet access. Please sign up here to be contacted when the web-based version is available.

I live outside of the US and want to participate. Can I?

At this time, The PRIDE Study is only open to adults at least 18 years old living in the United States. We hope that you will use the sharing icons available here to help spread the word about The PRIDE Study.

I’m under 18. Can I participate?

Unfortunately no. We are currently limiting participation to those over 18 years old, who live in the United States, and identify as a sexual or gender minority. Please come back when you are 18! In addition, check back with us regularly because we are hoping to expand the age range of the study soon.

My child or relative is LGBTQ. Can I participate on their behalf?

No. At this time, The PRIDE Study is only open to adults at least 18 years old living in the United States. The research study is designed only for individuals to participate in the study directly.

Technical Problems

I’m having problems with the app. What should I do now?

We are always working to refine the app and enhance the user experience. Sometimes bugs have to do with the app, sometimes with your phone or connection. Please confirm that you have the most current version of the app running by visiting the Apple App Store from your phone and tapping on “Updates.” Then, try quitting other apps. Finally, if you continue to have difficulty – we want to know about it!

Please send the following information to us by e-mail at support@pridestudy.org:

  1. Which version of iPhone (e.g. iPhone 5s, 6, 6 Plus, etc.) are you using?
  2. Which version of operating system are you running? (go to Settings → General → About. “Version” will be listed here and should be a number something like 9.2.)
  3. A description of the problem you are encountering.

Community Forum

How do I report comments that are offensive?

We have community monitoring standards that we follow. If you note offensive, abusive, or inappropriate behavior on the Community Forum, please use the “Flag” feature in the Community Forum. Please also note the user name and send this information to abuse@pridestudy.org.

Comprehension Quiz Challenges

I’m having trouble passing the comprehension quiz! What do I do now?

We’re sorry to hear this. Please send us your responses to the quiz questions in an e-mail to support@pridestudy.org, and we will work with you to figure out where things are going awry. To help the process along, cut and paste the questions below into an e-mail. Make sure to make your answers clear. If you would rather discuss with one of the members of The PRIDE Study team, feel free to call our offices at 415-476-2219 or 855-421-9991 (toll-free).

What is the purpose of this study?
Option 1: to help design research studies for the LGBTQ communities
Option 2: to understand why people are LGBTQ
My Answer was: _____

I must answer all survey questions.
Option 1: True
Option 2: False
My Answer was: _____

I can stop participating in the study if I would like.
Option 1: True
Option 2: False
My Answer was: _____

If I have a medical emergency, I should use this app to contact a doctor.
Option 1: True
Option 2: False
My Answer was: _____

This app is a medical research study.
Option 1: True
Option 2: False
My Answer was: _____

Questions about Survey Content

Why are the options on the race/ethnicity questions listed as they are?

Currently, the U.S. Census does not collect information on sexual orientation and gender identity. This means we do not know how many LGBTQ people there are in the U.S., where they live, or their basic demographics (including age, race/ethnicity, income, education, etc.). Medical professionals like doctors, health researchers, and public health officials use the census to describe the health of communities and to direct money and other resources towards improving health. We designed the demographic survey using the race and ethnicity questions from the U.S. Census so that we could compare the results with other national datasets. Although many people find these categories problematic or out-of-date, we want to make sure that The PRIDE Study data can be compared to other research. This will help doctors, researchers, and government officials understand the current state of LGBTQ health in comparison to the general U.S. population.

If this is a medical study, where do I put in my health information?

Currently, we want to hear your ideas about what you want us to study through participation in the Community Forum.

Additionally, completing the demographics physical health, mental health, and social health surveys are important for us to learn about your health and experiences. We will use these surveys and your responses in the Community Forum to help us design the longitudinal phase of the study (Phase II). When Phase II begins in 2017, participants will complete baseline health questionnaires followed by annual health questionnaires thereafter.

Help The PRIDE Study

I’m not LGBTQ. How can I support The PRIDE Study?

In addition to study participants, The PRIDE Study is made strong by friends, family, and allies of The PRIDE Study. We thank you for joining us in our vision of a world with full LGBTQ health equality.

There are three main ways to support The PRIDE Study without participating:

  1. Spread the word: Tell LGBTQ people and organizations about The PRIDE Study and get others to join. A simple way is by having them visit our website (pridestudy.org) or by texting PRIDESTUDY to 74121.
  2. Financial Support: Every dollar goes a long way to helping us realize our vision. Donations can be made here, are handled through The UCSF Foundation, and are tax-deductible.
  3. Donate your time: We have accomplished much because many people have donated their time and energy. Please sign up to volunteer or contact us at support@pridestudy.org to see you how you can support The PRIDE Study in your area.
How can I help get the news out about the study?

Thank you for your interest in the study and willingness to help publicize it! The PRIDE Study will be made strong by community outreach and engagement.

  • By Text: Tell people to text PRIDESTUDY to 74121 (standard messaging rates apply), and they will receive a text with a direct link to the iPhone app.
  • By Web: Send along the following page: pridestudy.me/getstarted
  • On Facebook & Twitter: Change your profile photo or tweet to show your commitment to eliminating LGBTQ health disparities by downloading one of three social media sharing icons here.
  • No iPhone?: Please sign up here to be contacted when the web-based version is available.
  • No Computer Access?: We will have options for people without computer access to participate in-person (San Francisco), by mail, or by telephone (anywhere in the United States). To learn more about this, please call us toll-free at 855-421-9991.
  • For Public Spaces: Download a poster that can be hung up in clinics and other public spaces here.
Do you have posters or brochures to help publicize the study?

Yes, you can download a poster that can be hung up in clinics and other public spaces here. We also have postcards available.

If you would like information about receiving materials (e.g., postcards, posters, or buttons) in the mail for posting or giving out, please e-mail us at support@pridestudy.org.

Research Collaboration

I’m a researcher interested in collaborating regarding LGBTQ health research topics. How can I be involved?

We are establishing an ancillary study process, so that we can review all the exciting collaborations people have in mind. Please check back to learn more about this process. If you already have a collaboration idea, you can contact us directly at pridestudy@ucsf.edu. Please be sure to include the following in your e-mail: researcher’s name, institution, position, and brief research question.

ResearchKit

What is your relationship with Apple?

The Apple ResearchKit team gave technical guidance on developing, launching the ResearchKit app, and publicizing it. The PRIDE Study has no financial relationship with Apple. We have not given or received any financial support from Apple. Furthermore, Apple had no intellectual input on the development of The PRIDE Study. Apple does not and will not receive any user-specific data from The PRIDE Study.