The PRIDE Study
It’s time to check in! The PRIDE Study has just launched the 2018 Annual Questionnaire, and we need your response to keep our study strong and improve the health of the LGBTQ community:
The PRIDE Study is a national longitudinal cohort of LGBTQ people who participate in health research through the internet or by calling our toll-free number. The main question we want to answer over many years is: How does being an LGBTQ person influence physical, mental, or social health?
- National means people from all US states and Territories can enroll.
- Longitudinal means we aim to follow people over multiple years.
- Cohort means we hope to keep the same group of people involved for years.
We partner with more than 35 LGBTQ groups from around the country, including trusted organizations like Fenway Health, Callen-Lorde, ZAMI-NOBLA, Whitman-Walker Health, the National Center for Lesbian Rights, GLMA, SAGE, and WPATH. For a complete list and links, please go to: https://pridestudy.org/pridenet
Who can enroll?
Anyone who lives in the US or Territories, identifies as LGBTQ, is 18 years or older, and meets all study criteria.
How do I enroll?
With your computer, tablet, or smartphone, go to www.pridestudy.org and click on the “JOIN STUDY” button. You can also enroll by calling toll-free 1-855-421-9991 (or 415- 476-4221 if calling from the U.S. Virgin Islands or American Samoa) to sign up.
What is the commitment?
It takes about 60 minutes to complete all sections of enrollment, depending on the details of your health history. We ask you questions about your sexual orientation, gender identity, and physical, mental, and social health. Every year, we survey you so you can update your information. Occasionally we will ask if you’d like to participate in additional surveys based on your specific health history.
The study is available through our website, and no longer limited to iPhone users only. There are interactive features that allow you to track how much of the survey you have already completed. You can see how many LGBTQ people across the country have signed up. You can even track our recruitment progress, according to state or territory of residence, age, or other demographic details.
Is The PRIDE study secure?
Yes! Very! We have state-of-the art protection for the data including at the participant (password protected), database (not accessible via Internet), platform (encrypted transmissions), and physical (extra security at location of servers) levels. We use Amazon Web Services (AWS), the same cloud computing company that is used by many Fortune 500 companies and banks. AWS data centers are located in buildings that use state-of-the-art systems to strictly control access and monitor for intruders. Additional security measures are used to prevent access to the server rooms.
How exactly is my information kept safe?
All communications between you and our system are secure electronic transmissions, and our data centers are physically secured. All our systems meet the requirements defined by federal law (United States Health Insurance Portability and Accountability Act or HIPAA). All our systems meet the University of California, San Francisco guidelines.
How is my information shared?
Your participation in The PRIDE Study matters only if we share the results with the people who can make real change for LGBTQ health. Pooled data about groups of people will be shared directly with you, healthcare professionals, policy-makers, and community organizations. Data cannot be traced back to individuals.
How is PRIDEnet different from The PRIDE Study?
The PRIDE Study is committed to involving the LGBTQ communities in the research process from end-to-end. PRIDEnet is our name for the network of organizations and individuals that give input through an advisory board and partner relationships.
Who Funds The PRIDE Study and PRIDEnet?
A non-profit organization called the Patient Centered Outcome Research Institute (PCORI) that generates health research that patients, their families, and their communities can use to improve health.
What have you learned?
The PRIDE Study completed an extensive pilot phase where we tested the online interface and survey questions, and we collected input from participants. We learned that participants are very concerned about issues like family support and violence and are willing to complete surveys with personal questions about things like stigma and trauma. Online recruitment works with our communities. Lots of organizations want to partner and are interested in health. We are currently analyzing data from several focus groups conducted in LGBTQ community centers.
Contact us with questions at firstname.lastname@example.org or by calling 855-421-9991 (toll free)
University of California, San Francisco 550 16th Street, 6th Floor, UCSF Box 1793 San Francisco, California 94158
T 415.476.2219 or 855.421.9991 (toll-free) email@example.com | pridestudy.org