General Study Information
The PRIDE Study is the first large-scale, long-term national health study of people who identify as lesbian, gay, bisexual, transgender, queer, or another sexual or gender minority (LGBTQ+). The main question we want to answer over many years is: how does being an LGBTQ+ person influence physical, mental, or social health?
PRIDE stands for Population Research in Identity and Disparities for Equality.
The PRIDE Study divided into two phases to ensure LGBTQ+ community members were able to help shape many aspects of the study.
Phase I, the “community listening” phase, began in June 2015. Our team gathered basic demographic and census data via The PRIDE Study iOS app to understand the health questions, concerns, and priorities of LGBTQ+ communities. Using insights from Phase I, we moved the study from the app to a web-based platform in 2017, which launched Phase II of The PRIDE Study: the prospective longitudinal cohort study. The PRIDE Study is now available on any web-enabled device, meaning you can participate from a computer, tablet, or smartphone.
A longitudinal cohort study collects data and observes the same group of people over time, which can extend over years or even decades.
The PRIDE Study will last for 10 years or more. This will allow doctors and researchers to study health over time, in order to find out new things about improving the overall well-being of LGBTQ+ communities.
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 supported by a team of dedicated doctors, researchers, and community engagement specialists at Stanford University and the University of California at San Francisco. Learn more about our team.
The PRIDE Study is deeply committed to involving LGBTQ+ and other sexual and gender minority people in all stages of the research process. The “community listening” phase (Phase I) ensured community members were able to help shape many of the features of the longitudinal cohort study (Phase II), which is now available through any web-enabled device. In addition, The PRIDE Study actively involves LGBTQ+ communities to participate in health research through PRIDEnet.
PRIDEnet is a network of individuals and organizations that actively involve our community in every stage of how LGBTQ+ health research is created, analyzed, and shared from The PRIDE Study. Through our Participant Advisory Committee (PAC) and Community Partners, PRIDEnet builds on decades of work by activists, health advocates, service providers, and researchers to improve the health and well-being of LGBTQ+ communities.
If you would like to join PRIDEnet as a Community Partner, please contact us at email@example.com.
Support for The PRIDE Study is provided by resources from Stanford University, the University of California at San Francisco, research grants from public and private institutions, product donations, pro bono services, and individual donations. In addition, we actively seek funding from foundations that focus on health, LGBTQ+ issues, and social justice.
We have also received funding from Stanford University, the University of California at San Francisco Resource Allocation Program, the Patient-Centered Outcomes Research Institute (PCORI), and the National Institutes of Health (NIH).
Our team of doctors and researchers designed a majority of the questions with input from the community, but we also use some questions typically found in large health surveys. By asking identical questions, our team can directly compare findings from The PRIDE Study with those of other health studies. Additionally, we regularly collect feedback on which questions should be changed, added, or completely removed, in order to improve the LGBTQ+ health data we collect.
Yes! As doctors and researchers, we clearly understand that information about your life 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 physically and digitally secured.
All studies are reviewed by the WCG IRB. In addition, we have earned a Certificate of Confidentiality (CoC) from the National Institutes of Health (NIH).
Learn more about The PRIDE Study’s data security.
We want participating to be easy! Make your contribution to LGBTQ+ health research by joining through our secure web platform, which is accessible from any computer, tablet, or smartphone.
We designed The PRIDE Study to focus on the experiences of LGBTQ+ people, since most prior research hasn’t meaningfully included them. Some health experiences don’t need a comparison group because they describe our communities. Also, some experiences are unique to LGBTQ+ people and may have no parallel among exclusively cisgender heterosexual people. We understand the importance of meaningful comparisons to highlight disparities and resiliencies between our communities and communities of cisgender and/or heterosexual people. We designed our research with comparisons to other large studies in mind. One reason our questionnaires are so comprehensive is because we include questions found in other large health surveys. By asking those questions – which are presumably done with mostly cisgender heterosexual people or where participants aren’t asked their sexual orientation and/or gender identity – we can compare our findings with results published by those other studies.
At the moment, it is rather difficult to get Apple Watch data into our databases for analysis: it requires a participant to download and authorize an additional iPhone app that transfers data into our database. This is different from Fitbit or other trackers where a user grants permission to our servers to access the data in their account. Nonetheless, we are looking into including Apple Watch in the future as well as other ways that make it easy for participants to share their health tracking data.
Participating in the Study
Thanks for participating in Phase I of our study on the iOS app! Your contributions, along with 8,500+ community posts, helped shape Phase II of The PRIDE Study online.
Although you can use the same username from the app to login to the website, in our move to Stanford University, you’ll note that we ask you to re-consent to be a participant. This is a small but important formality that helps us ensure that you are always protected as a research participant in The PRIDE Study.
Some information you entered in the app will auto-populate on the website, while other information—like confidential sections of your medical history—will not. Please be sure to complete any missing items in the My Profile and My Health sections. Also check to make sure your contact information is up-to-date – we don’t want to lose you!
After Phase I, we suspended the iOS app in order to make The PRIDE Study accessible to more members of the LGBTQ+ community. You can now participate from any web-enabled device (computer, tablet, or smartphone) by visiting pridestudy.org.
We know your time is valuable. That is why a minimum of 45 minutes once a year is all it takes to help us achieve our goal. After enrolling online, you will have the option to complete our Annual Questionnaire (AQ) survey. Depending on the details of your health history, some participants will be invited to complete additional questionnaires or other forms of research about specific health topics.
The exact time it takes may vary depending on the answers you give to each question, but we estimate it takes the average participant 45 minutes to complete the study. If you start the AQ and need to finish at a later time, select Save and Exit in the upper-right corner of your screen to save your spot.
If we haven’t heard from you in a few years – and if you haven’t officially withdrawn from the study – we use this information so we can try to find you! Following participants to better understand their precise health care needs is an important benefit of long-term studies like ours.
Please note that all fields are optional, so feel free to leave out any information you don't want to share with The PRIDE Study.
We do not currently automatically offer any kind of money, gift, or financial compensation for participating in The PRIDE Study. At this point, participation is all voluntary and your participation supports the mission of our project. In fact, most of our research team are volunteers as well! However, we give the results of the research back to our participants and the larger LGBTQ+ community, so that results of the study have broad reach and impact beyond academic journals. Often we are able to hold prize drawings for certain activities, like survey completion. In such instances, we randomly select winners from participants who have completed our annual surveys. Because these drawings do not happen with regular intervals or for consistent prizes, we only announce them in emails to participants when we have a drawing. Prizes vary. Examples include $25 Amazon.com Gift Cards and Fitbit Charge 3s (valued at $150 each).
Like all research studies, you can choose to stop participating in the study at any time. However, we hope that you'll stay with us long-term so we can continue to learn about you as your life changes!
If you are a participant and wish to leave the study, complete the Withdraw From Study section under “Account Settings” in the participant portal. Although we’re sad to see you go, we’d love to know how we can improve The PRIDE Study experience for current and future participants.
Let us know your preferred method of communication by updating the Communication Preferences section under “Account Settings” in the participant portal.
When available, results from The PRIDE Study will be shared directly with you, health care professionals, policymakers, and community organizations through our website and digital communication channels, as well as in publications, presentations, and conferences.
Identifying information about you will never be shared. Rather, the data gathered from The PRIDE Study will only be shared in aggregate form. We will only share summary statistics, like averages, for the purpose of illustrating informative trends or details regarding the overall health of LGBTQ+ communities.
The study is open to all LGBTQ+ or other sexual or gender minority (SGM) adults ages 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). You don't need to be ill or in crisis to participate. If you're eligible and interested, please join our study!
We know that there are many additional identities within the broad spectrum of gender minority and sexual minority people. We welcome participation from people who identify as a gender minority (for example: agender, genderqueer, non-binary, questioning one's gender identity, Two-Spirit, etc.) and/or people who identify as a sexual minority (for example: asexual, pansexual, questioning one's sexual orientation, same-gender loving, Two-Spirit, etc.). Intersex individuals who identify as a gender minority and/or sexual minority are absolutely welcome. We will ask you about your specific gender and sexual identities in our surveys after you have consented to be a research participant. We have requirements for minimum age and residency that we list elsewhere in the FAQs.
We welcome participation from people who identify as a gender minority (for example: agender, genderqueer, non-binary, questioning one's gender identity, Two-Spirit, etc.) and/or people who identify as a sexual minority (for example: asexual, pansexual, questioning one's sexual orientation, same-gender loving, Two-Spirit, etc.). Intersex individuals who identify as a gender minority and/or sexual minority are absolutely welcome. We will ask you about your intersex identity, as well as your specific gender and sexual identities, in our surveys after you have consented to be a research participant. We have requirements for minimum age and residency that we list elsewhere in the FAQs.
The primary focus of The PRIDE Study’s research is on the health and well-being of sexual and/or gender minority people, and we do include questions about romantic minority health in our questionnaires. Consequently, we can use current data to publish results about romantic minority health among those who self-identify as sexual and/or gender minority people. Deeper investigations in romantic minority health are possible through our Ancillary Studies [https://www.pridestudy.org/collaborate] process.
We are working to translate our materials so that eligible English as a second language (ESL) participants can fully participate.
You can access The PRIDE Study from any web-enabled device, such as a computer, tablet, or smartphone, by visiting pridestudy.org.
You must be at least 18 years of age when you enroll. However, we hope to expand the age range of the study in the future!
Institutional Review Boards require professional research with people under 18 to have age-appropriate language in survey questions. The PRIDE Study will be able to enroll participants under 18 once we have greater bandwidth to undertake the major effort of reviewing all of our current measures of physical, mental, and social health for age-appropriate language; assessing which substitutions must be made and finding the appropriate measures; and determining all the potential ways those substitutions impact participants and planned analyses. For the time being, The PRIDE Study will enroll only people ages 18 and older.
To be notified when you are eligible to participate, please start the enrollment process and be sure to enter your correct date of birth.
No. The PRIDE Study is designed for LGBTQ community members to participate directly in the study, not through a relative or other contact.
At this time, The PRIDE Study is only open to LGBTQ adults living in the United States and U.S. territories.
Change your notification settings by updating the Communication Preferences section under “Account Settings” in the participant portal.
The gender identity and sexual orientation answer choices we use are very intentional. The options shown are based on national research with LGBTQ+ community members conducted by ourselves and other LGBTQ+ researchers in the field. If you don’t see an option in either of the gender identity or sexual orientation categories that speaks to your experience, please select “Another:_____” to tell us more about how you identify. We have a process in which we periodically review the answers given to “Another,” to see when we should update our identity categories.
Once you’re enrolled, all participants have the option to complete our primary survey, the Annual Questionnaire. Depending on the details of your health history, some participants will be invited to complete additional surveys or other forms of research about specific health topics beyond the scope of The PRIDE Study.
For example, some surveys will only be available to participants who have a certain identity or a specific health condition, are a part of a certain age group, or reside in a certain regional location. We refer to these additional research projects as Ancillary Studies.
The current best practice guidelines for online research surveys does not recommend allowing participants to go back to change answers on previous screens. This is because your answers on previous screens influence the questions you will be shown later in the survey.
For some surveys we make exceptions and allow back buttons. For other surveys, we can’t.We understand that mistakes happen, but if we can't allow you to go back, we encourage you to keep going! One benefit of partnering with us long-term is that future questionnaires will likely touch on the same topics.
While we definitely want to know whatever you are willing to share, you are free to skip any question that does not apply or makes you feel uncomfortable. If you have feedback about research questions, please email us at firstname.lastname@example.org. We always welcome feedback to improve The PRIDE Study experience for all participants.
If you have any questions, concerns, or complaints about this research study, its procedures, and risks and benefits, please contact us by e-mail at email@example.com, by telephone at 855-421-9991 (toll-free), or by mail at 300 Pasteur Drive, Mail Code 5376, Stanford, CA 94305. You should also contact us at any time if you feel you have been hurt or made ill by being a part of this study.
This study is being overseen by WCG IRB. An Institutional Review Board (IRB) is a group that performs independent review of research studies. You may talk to them at 855-818-2289 or firstname.lastname@example.org if you have questions, concerns, or complaints that are not being answered by the research team; you are not getting answers from the research team; you cannot reach the research team; you want to talk to someone else about the research; or you have questions about your rights as a research subject.
Email us at email@example.com. We always welcome feedback to improve The PRIDE Study experience for all participants!
The PRIDE Study incorporates your input, along with feedback from PRIDEnet PAC members and Community Partners, as valuable sources of information in a rigorous review process when revising and improving our research surveys.
Yes! You can see the current Lifetime Health & Experiences Survey, and all current and past Annual Questionnaires on this page. Look under “The PRIDE Study Questionnaire Codebooks”. Complete the form to receive the survey codebook you want.
We research numerous aspects of the mental, physical, and social health of LGBTQ+ people. Specific topics include, but are not limited to: General Physical Health (diagnoses, conditions, symptoms, etc.); Healthcare Access; Sexual Behavior; Pregnancy and Family Planning; General Mental Health (diagnoses, conditions, symptoms, etc.), Emotion Regulation; Substance Use; Social Isolation; Experiences with Violence, Harassment, and Discrimination; Experiences with Spiritual and/or Religious Groups. From year to year, some of the specific topics included may change, depending on what other specific health topics are included that year. If you would like to see our full questionnaires, please visit our Collaborate webpage, and request a PDF of our questionnaire codebook(s).
The PRIDE Study cares about all aspects of LGBTQ health and well-being. That said, we sometimes struggle to find the right balance of choosing which physical, mental, and social health questions to include, without making the study so long that participants will not want to finish it.
One way we try to achieve a balance is by asking multiple open-ended questions such as, Is there anything else that you want to tell us about your health? These questions invite you to share something you feel is important for us to know, or to tell us something we might not have already asked.
If you completed your survey and have suggestions for additional research topics or questions, please email us at firstname.lastname@example.org.
While we recommend that participants complete the survey on one device, you have the option to switch between devices. Just be sure to select Save and Exit in the upper-right corner of the questionnaire when you are ready to exit; you’ll then be able to pick up where you left off on another web-enabled device.
Currently, a participant has to fill-in a certain number of fields, in order for a section in My Profile to display as complete. This information helps us have the best understanding of our participant population. However, as with all research, answering any question is optional, including in your profile. Perhaps you chose not to answer certain question(s), which is fine with us, but those unanswered questions will prevent the status bar from showing 100%.
You can access your profile by visiting https://pridestudy.org/login. We recommend bookmarking this page for easier future access.
There are a few places in the Annual Questionnaire (AQ) where you will be asked follow-up questions, depending on the answers you provide about your medical history. If you have a weak internet connection or data signal when taking the study, these questions may fail to load properly. This is because the survey dynamically responds to your answers while customizing research questions that will be asked later in the AQ. However, if you move on to the next page before the questions load, you lose the opportunity to complete those questions. If you didn’t answer them this year, don’t worry: one benefit of partnering with us long-term is that future AQs will likely touch on the same topics.
If you log into the participant portal and see a Continue button under a survey name, you still have questions to answer in the survey. Selecting Continue will launch the survey right where you left off.
There are multiple reasons why some surveys of The PRIDE Study may seem to end quickly. Some surveys may be limited to particular identities (e.g., only transgender women) or demographics (e.g., only those assigned female sex at birth), while other surveys may have reached the desired number of respondents for a particular study.
If you finish all the surveys on your dashboard and are still notified of incomplete questionnaires, we apologize. We designed the participant portal to tag surveys as complete only if a participant selects “Return to Dashboard” on the final page of every survey they finish. If you close the browser window once you reach the final Thank You screen without selecting “Return to Dashboard”, your survey won’t be tagged as complete. We are working with our technical team to fix this bug.
In the meantime, we added a reminder for participants to select Return to Dashboard at the end of each survey, in order to ensure your questionnaires are logged as complete.
Contact us if you have problems participating in or completing The PRIDE Study.
Help The PRIDE Study
If you identify as LGBTQ, live in the United States, and are at least 18 years old, become a participant today! If you are ineligible to apply, are an ally, or just want to stay in touch with us, sign-up for our mailing list!
Help us spread the word about The PRIDE Study! Check out resources you can share online or in your local community. Interested in having The PRIDE Study come to a local event or conference? Send us a message with more information – we’d love to hear from you!
Every dollar, every minute, and every resource helps ensure the long-term success of The PRIDE Study and our efforts to improve the health of the LGBTQ community.
Through Ancillary Studies, researchers working on academic or community-based projects related to LGBTQ health can apply to work with The PRIDE Study team. We welcome the opportunity to support high-quality research collaborations between PRIDEnet and outside studies that aim to improve the health and well-being of LGBTQ communities.
Stanford University is our home institution and owns the data. However, our research team controls ALL access to identified (where participants’ identities are visible) and de-identified (where participants’ identities are not visible) data. We release small sets of de-identified data only to vetted individuals after we have approved their project proposals. This approval process requires a rigorous review by our RAC and PAC, and signature of a Data Use Agreement. In order to ensure that participants cannot be identified, and that participant identities can never be disclosed outside of the research team (even in the cases of legal action), we have obtained a National Institutes of Health Certificate of Confidentiality. Our full consent form, required by the Stanford IRB, is available for view and download here.