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General Study Information

The PRIDE Study is a national, online, prospective, longitudinal cohort study of the lesbian, gay, bisexual, transgender, and queer (LGBTQ) communities. The central question of The PRIDE Study is “What is the relationship between being sexual or gender minority, which includes but is not limited to being LGBTQ, 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.

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

The PRIDE Study launched on June 25, 2015 with Phase I – the “community listening” or pilot phase. We launched Phase II – the prospective longitudinal cohort study – in 2017. The community’s responses from Phase I helped us design Phase II. But we continue to respond to community input, and by getting involved now, you can continue to help shape the study going forward!

A longitudinal study is a research study that collects health information about people over time. In The PRIDE Study, our longitudinal study 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 support LGBTQ health and combat disease.

A longitudinal study is “prospective” if data collection begins when a participant first enrolls in the study. This is in contrast to a “retrospective” study in which researchers analyze data that was previously collected; this often involves reviewing medical records of participants. A longitudinal study is a “cohort” study when the intent is to follow the same group of people over time.

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

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 (SGM) and health. The PRIDE Study is divided into two phases to ensure that LGBTQ community members are able to help shape many aspects of this long-term study. Phase I – the “community listening” or “pilot” phase – began on June 25, 2015. In Phase I, we invited LGBTQ/SGM 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 launched Phase II in 2017. Phase II is available on a dynamic web platform, which means that people can choose to participate via all web-enabled devices – smartphones, tablets, and computers. Phase II participation will include annual questionnaires as well as questionnaires about a variety of specific topics.

The PRIDE Study is run by a team of doctors and researchers at the University of California, San Francisco, but is also heavily influenced by a growing network of LGBTQ community partners through our participant-powered research network (PPRN) called PRIDEnet. You can learn more about PRIDEnet 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!

The PRIDE Study is committed to involving the LGBTQ and other sexual and gender minority (SGM) communities in the research process from end-to-end. For this reason, we have built mechanisms for participants to propose and prioritize research questions. Additionally, our participant-powered research network (PPRN) called PRIDEnet intentionally includes community members in the research process. As part of PRIDEnet, we are partnering with dozens of 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.

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 partnering with dozens of 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 support@pridestudy.org.

The PRIDE Study uses a participant-powered research network (PPRN) model for conducting research. This means a research study intentionally creates and supports a network of individuals and organizations who are motivated to be connected and involved in research about their own communities and their own health. For The PRIDE Study, the individuals and organizations are all members and allies of the LGBTQ communities.

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 here via The UCSF Foundation or contact us for more information about monetary and non-monetary ways that you or your organization can contribute.

While some of our images are stock photos, we are truly honored to incorporate some of the work of local LGBTQ San Francisco based photographer, Sarah Deragon. Learn more about her not so corporate headshots here, or follow The Identity Project. Please check out her work!

Security

Yes! As doctors and research scientists, we clearly understand that information about your life and health is personal. 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, and we have earned a Certificate of Confidentiality by the National Institutes of Health. All studies are reviewed by the University of California, San Francisco - Human Research Protection Program.

Information Collection

We want participating to be easy! Currently you can participate through our secure website, which is accessible from any computer, tablet, or smartphone.

We plan to have in-person, telephone, and U.S. mail options for participation as well. If you have questions about the best way to participate, please send an e-mail to support@pridestudy.org or give us a call at 1-855-421-9991 (toll-free).

At the moment, it is rather difficult to get Apple Watch data into our databases for analysis. It requires a user to have an iPhone app and authorize that app to put data into our database. This is different from Fitbit or other trackers in which you create an account on Fitbit and then grant access to our servers to access the data in that account. Nonetheless, we are looking into including Apple Watch in the future and other ways that may make it easy for people to share that data.

Participating in the Study

Thank you very much for your participation in Phase I of The PRIDE Study. You can use the same username (your e-mail address) and password to log into the study’s website. Some of the information you entered in the app will be automatically transferred to the website. However, because not all information can transfer over and the study has expanded you do have to “re-enroll.” Additionally, we recognize that a lot can change since you downloaded the app. Because of this, we would greatly appreciate it if you fully complete “My Profile” and “My Health” even though you may have provided some of this information previously. By doing this, you can help us ensure that we have the most updated information!

If you are having challenges logging in to The PRIDE Study website as a former iOS app user, we recommend that you simply enroll in The PRIDE Study by visiting https://register.pridestudy.org/eligibility. You will need to go through eligibility, and we apologize for that extra step. But this will be the fastest way to get you enrolled and activated in our new system.

At this point, the app will be going away since we have made the full study available through any web-enabled device (any smart-phone, tablet, laptop, desktop computer). We have already removed it from the Apple App Store. Please access the study via https://pridestudy.org, and not by the app.

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

You will be invited to complete our annual health questionnaire, which is designed to take between 30-45 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 support LGBTQ community health and combat disease.

We have received a few comments about this, so we will be adding additional descriptions near those fields to explain why we are collecting this information. In short, it is so we can try to find you if we haven't heard from you for a few years (and you haven't officially withdrawn from the study). Following participants to better understand their health is an important benefit of long-term studies like ours. Please note that all fields are optional, so feel free to leave any information blank that you don't want to share with us.

Like all research studies, you can choose to stop participating in the study at any time. However, 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 this important project! If you are currently enrolled in The PRIDE Study and wish to leave the study, you can do so by going to “Account Settings” to complete the “Withdraw From Study” section. If you need help with this, please contact us at support@pridestudy.org or give us a call at 1-855-421-9991 (toll-free).

You can let us know your preferred communication method(s) including e-mail, text message, telephone, and U.S. mail (“snail mail”). You can do this by going to “Account Settings” and updating the section called “Communication Preferences.”

When available, results from The PRIDE Study will be shared directly with you and the medical community through publications and health 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 that are produced by The PRIDE Study will only be shared in aggregate, which means that we will only share summary statistics like averages, for the purpose of showing informative trends or details about the overall health of LGBTQ communities.

The study is open to all LGBTQ or another sexual or gender minority (SGM) adults aged 18 years and older who currently live in the United States and U.S. territories (Puerto Rico, Guam, United States Virgin Islands, Northern Mariana Islands, and American Samoa). If this describes you, please join the study. Help us spread the word, donate, or simply join our mailing list to stay informed.

We are working to translate our surveys and develop our website and databases, so that eligible participants can use a language other than English. We hope to make participation available in Spanish by the end of 2017.

You can participate in The PRIDE Study through our secure website that is accessible on any device (smartphone, tablet, or computer) that can connect to the Internet.

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

Unfortunately, no. We are currently limiting participation to those who are at least 18 years old, who live in the United States and U.S. territories, and who identify as LGBTQ or another sexual or gender minority. However, we hope to expand the age range of the study soon. If you wish to be notified of when you can participate, please start the enrollment process here and please be sure to enter your correct birthday.

No. At this time, The PRIDE Study is only open to adults at least 18 years old living in the United States and U.S. territories. The research study is designed only for individuals to participate directly in the study, not through a relative or other contact.

Technical Problems

Currently, a participant has to complete every field in order for a section in My Profile to show 100% completion. However, as with all research, answering any question is optional, including in your profile. Perhaps you chose not to answer a question, and that prevents the health completion bar from showing 100%. We will work on changing this reading for a future update of this screen, after we have some time to review what constitutes "complete".

There are a few places in the questionnaire where you will be asked follow up questions, depending on the answers you provide. We found that these additional questions may not load well if you do not have a strong data signal. This is because our system is dynamically responding to your answers and customizing survey questions for you. If you can, try to answer the questionnaire while having a strong data signal. Typically these load problems resolve themselves quickly once the data speed or connection picks up again, but if you move on to the next page before the page loads, you will miss those questions. It is ok if you missed those questions this year. One benefit of partnering over the long-term is future questionnaires will likely touch on the same topics.

You may still have questions to answer in the Annual Questionnaire. If you log into your dashboard at http://www.pridestudy.org/login, you will see a CONTINUE button under the 2017 Annual Questionnaire in the "Surveys" section. Clicking on CONTINUE should launch the survey right where you last left off.

If you are having problems participating in The PRIDE Study, please submit your issue through the Contact page here.

Help 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 where the LGBTQ communities’ health is understood completely and where LGBTQ communities experience their health as being fully equal to all other communities’ health.

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

  • 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 (Standard messaging rates apply).
  • 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.
  • 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 how you can support The PRIDE Study in your area.

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

  • By Text: Tell people to text PRIDESTUDY to 74121 (standard messaging rates apply), and they will receive a text with a direct link to enroll in The PRIDE Study.
  • By Web: Send along the following page: https://pridestudy.org
  • On Facebook & Twitter: Change your profile photo or tweet to show your commitment to understanding and equalizing LGBTQ health by downloading one of three social media sharing icons here.
  • No Computer Access?: We have options for people without computer access to participate in-person (San Francisco, California), by U.S. mail, or by telephone (anywhere in the United States and U.S. territories). To learn more about this, please call us toll-free at 855-421-9991, or at 415-476-4221 if calling from the U.S. Virgin Islands or American Samoa.

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

If you go to The PRIDE Study website, at the bottom of the Media & Resources page (https://pridestudy.org/media), you will find materials to help you share The PRIDE Study via Facebook, Twitter, and e-mail.

Research Collaboration

We are establishing a review process so that we can formally evaluate 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 support@pridestudy.org. Please be sure to include the following in your e-mail: researcher’s name, institution, position, and brief research question. To be informed about collaboration opportunities as they become available, please sign up for our mailing list.