STRIVE Study Participants FAQ

WHAT DOES STRIVE STAND FOR?

STRIVE stands for Support for Transgender and Nonbinary Individuals Seeking Vaginoplasty. Our goal is to help make the experience of getting vaginoplasty more supportive, informed, empowering, and fulfilling.

WHAT IS STRIVE RESEARCHING?

We’re looking at one big question: Does getting support from someone who’s had vaginoplasty help improve the experience and outcomes for others?

There are so many questions that come with surgery: how to prepare, what to expect, how to recover, how to move forward with life... We believe that having someone to talk to who ‘gets it’ can make a big difference.

STRIVE is collecting data to back this up. We hope this research will help create more peer support programs for trans people around the world.

WHAT IS THE PURPOSE OF STRIVE?

We want to learn how peer support groups impact the health and wellbeing of people getting vaginoplasty.

We’re looking at a few things, like:

Does it help people feel more confident in how they cope with stress?
Does it help more people meet the requirements for surgery?
Do participants, peer support specialists, and care teams find it helpful?

We’ll also look at other areas of health and wellbeing.

HOW WAS STRIVE DESIGNED?

STRIVE was built with the community, for the community. It started with a group called TRANS-ARC. This national team was made up of trans patients, caregivers, advocates, researchers, and more, all focused on improving surgery outcomes.

In 2021, TRANS-ARC held a summit and created a plan to center trans voices in research. One major need that came up: peer support and education for people preparing for surgery. From there, STRIVE was born.

The STRIVE sessions themselves were created by a team of trans people with vaginoplasty experience, along with clinicians and community leaders, including our partners at Trans Lifeline.

We also worked with a trans-led design team, Rabbit Rabbit Studios, to make all our materials accessible and affirming.

AM I ELIGIBLE TO PARTICIPATE

You may be eligible if:

You are seeking gender-affirming vaginoplasty
Your care team recommends you for the study
You are getting care at one of these medical centers:

Oregon Health and Science University (OHSU)
New York University (NYU) Langone Health
University of Utah Health
Rush University Medical Center
University of California San Francisco (UCSF) Health
University of Minnesota M Health
Temple Health

WHAT WILL I NEED TO DO IF I JOIN?

If you're eligible, a team member will reach out after your consult. They’ll explain the study, go over consent, and help you start your first survey.

After that, you'll be randomly placed into one of two parts within the study:

STRIVE – You’ll join a virtual education and support group led by trained trans peer-support specialists.
Usual care – You’ll receive your regular pre-op care, along with STRIVE’s additional educational materials.

You’ll be asked to fill out surveys at 6 and 12 months. If you have surgery during the study, you’ll complete a few more before and after surgery.

WHAT’S COVERED IN THE STRIVE SESSIONS?

The STRIVE program includes six virtual group sessions. In these, you’ll:

Learn ways to manage stress before and after surgery
Plan how to ask for support from friends, family, or others
Get real advice on preparing for surgery and recovery
Share and connect with others going through the same journey
Reflect on how to use these skills beyond surgery

HOW MUCH WILL I GET PAID?

You’ll earn $40 for each survey you complete, plus a $15 bonus for the final survey if you’ve done all the others. This means you can earn up to $135 total. If you have surgery during the study and do the three extra surveys, you can earn up to $255.

HOW WILL I GET PAID?

You’ll get a ClinCard, which is a prepaid debit card. We’ll send it to you after your first survey. We’ll keep loading money onto the same card as you complete more surveys, so hang on to it!

Lost your card? No problem, just contact the STRIVE team, and we’ll get you a new one.

More info on ClinCard here: https://greenphire.com/patient-payments/clincard-participant-support/

AM I ‘TAKING A SPOT’ FROM SOMEONE WHO MAY NEED IT MORE?

Not at all. If you’re eligible, we want you to join! STRIVE is a pragmatic trial, which means we want to see how the program works in the real world. This means we’re looking for people from all kinds of backgrounds and support systems. Plus, if you join STRIVE group sessions, your unique perspective might help others in the group too!

I HAVE A BUSY SCHEDULE; HOW MUCH TIME WILL THIS TAKE?

We estimate it will take about 14 hours over the 12-month study window. Here’s how it breaks down:

30 minutes for screening and consent
30 minutes per survey
30 minutes to prep for each STRIVE session
90 minutes for each group session or to review the additional education materials

I AM NOT SURE IF I WOULD LIKE TO BE IN A GROUP; CAN I STILL JOIN?

Because the study is randomized, you’ll need to be okay with joining a virtual peer support group if that’s the part of the study you're placed in. If you’re not comfortable participating in group sessions, this study might not be the right fit.

I WAS PLACED IN ENHANCED USUAL CARE; CAN I STILL JOIN A GROUP?

We know the group sessions can be appealing. But because this is a randomized study, we need to keep the two parts of the study separate. We believe the STRIVE educational materials you get are still valuable additions to your pre-op care. In fact, the materials between the two groups are pretty much the same, the only difference is if you complete them on your own or in a group.

If you’re looking for extra support, we recommend reaching out to your care team or Trans Lifeline, they’re a trans-led support line and a great resource: 877-565-8860

DO I NEED TO BE ON CAMERA DURING GROUP SESSIONS?

We encourage having your camera on for the Zoom sessions. This helps build trust and connection for everyone in the group. But we totally understand if that's not always possible. You can keep it off and turn it on if/when you're comfortable.

Just know that group activities use features like chat, polls, and breakout rooms, so calling into the Zoom session by phone isn’t preferred.

HOW WILL GROUPS BE SCHEDULED?

You’ll get a link to schedule your sessions using a tool called Acuity. We try to offer a wide variety of days and times (weekdays, weekends, mornings, afternoons, evenings) so you can find something that works for you.

Don’t see a time that fits? Reach out to the STRIVE team and we’ll do our best to put you in a future group.

HOW DO I RESCHEDULE A GROUP SESSION?

Just contact the STRIVE study team! Let us know what session you’ll miss, and we’ll help you get rescheduled.

I SAW SOMETHING ABOUT PARTICIPATING IN AN INTERVIEW; CAN YOU TELL ME MORE?

If you join STRIVE group sessions, we may ask you to do an optional 1-hour interview. It’s a chance to share your experience: what you expected, what happened, and how things could be improved.

You can let us know on your consent form if you're open to being contacted. If you're selected and agree, you'll receive $100 as a thank-you for your time.

WHO CAN SEE MY DATA?

The research study team—based at OHSU, the University of Washington, and your STRIVE site (if outside of OHSU)—may see your information to operate the study.

A few approved partners may request access to general data for study monitoring. This could include:

The Patient-Centered Outcomes Research Institute (PCORI), our funder
The Office for Human Research Protections, a federal agency that approves research involving humans, including the ethics board at each site
The Data Coordinating Center at the University of Washington and their contractors

These partners may review your study records if necessary to ensure proper and safe study conduct.

You can also ask to have your data removed from the study database later if you change your mind.

HOW IS MY INFORMATION KEPT SAFE?

We understand that there are many ongoing threats to the safety and privacy of trans and nonbinary individuals. We take your privacy seriously. Your info won’t be shared with anyone not listed above unless it’s required by law. We also have a Certificate of Confidentiality from the NIH. This means we can resist demands to provide your info, even if a court asks for it.

The STRIVE team is committed to protecting your safety and privacy, and we are prepared to resist any demands for study data that are unethical or motivated by transphobia.

For future research, any shared data will be de-identified, meaning it won’t be linked to you.

WHAT IS ‘MANDATORY REPORTING’ and HOW DOES IT APPLY TO STRIVE?

By law in the U.S., we must report any suspected child or elder abuse. If we learn about something like this, we’ll report it to the proper authorities.

Also, while STRIVE doesn’t have the ability to provide crisis support, a team member will reach out if you express thoughts of harming yourself on a survey or during group sessions.

If you need support right away, please call Trans Lifeline at 877-565-8860, or visit your local emergency room.