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, 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 firstname.lastname@example.org.
Support for The PRIDE Study is provided by resources from Stanford University, the University of California - 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 the University of California, 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 Human Research Protection Program (HRPP) at Stanford University. 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.
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 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. From time to time and depending on multiple factors, 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. Past prizes have included $50 Visa 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 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.
At this time, The PRIDE Study is only open to LGBTQ adults living in the United States and U.S. territories.
You must be at least 18 years of age when you enroll. However, we hope to expand the age range of the study soon!
To be notified of 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.
Change your notification settings by updating the Communication Preferences section under “Account Settings” in the participant portal.
The gender identity answer choices we use are very intentional. These options are based on recommendations and guidance from The Williams Institute and UCSF’s Center of Excellence for Transgender Health. The sexual orientation answer choices are identical to the ones that were offered in Phase I of The PRIDE Study iOS app. Our team added a few more options to this category in Phase II to ensure participants have answer choices that work for them and their own identity. 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.
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 allow 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.
We understand that mistakes happen, but 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.
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.
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 in the 2019 Annual Questionnaire 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.
- Sexual Violence. We realize that recalling past experiences with sexual violence can be difficult. To talk with someone about these experiences, please consider reaching out to the National Sexual Assault Hotline, operated by Rape, Abuse, & Incest National Network (RAINN), at 800-656-4673
- Pre-Exposure Prophylaxis (PrEP). Talk with your medical provider to learn more about Pre-Exposure Prophylaxis (PrEP), or visit the Centers for Disease Control and Prevention website for more information. When you are ready, find a PrEP provider near you and learn about programs to help pay for PrEP with Gilead Patient Assistance Programs
Here is an additional list of resources that may be helpful in promoting LGBTQ people's health and well-being:
- Find an LGBTQ community center near you through Centerlink, The Community of LGBT Centers
- Find free HIV testing in your area through the Centers for Disease Control and Prevention's GetTested Program
- Find an LGBTQ-friendly doctor through GLMA: Health Professionals Advancing LGBT Equality
- If you are in crisis or thinking of suicide, talk with someone 24/7 at the National Suicide Prevention Lifeline at 1-800-273-8255
- If you need support related to being a survivor of sexual assault, talk with someone 24/7 at the National Sexual Assault Hotline at 1-800-656-4673
Currently, a participant has to fill-in every field in order for a section in My Profile to display as complete. However, as with all research, answering any question is optional, including in your profile. Perhaps you chose not to answer a question, which prevents the status bar from showing 100%. We will work on changing this display for a future update of participant profiles.
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.
In our transition to Stanford University, we will be unable to process new Ancillary Study applications until early January 2020. If you have already submitted an application, please note that the review process will be delayed until further notice. If you have any questions, please email email@example.com.
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.