The ENCORE Study

The Study

Be a part of a health research study exclusively for trans women and trans feminine people

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About ENCORE

What

ENCORE is a study exclusively for trans women and trans feminine people in the United States and Puerto Rico.

Who

ENCORE is a team of health, research, and trans-led community organizations.

Why

There are no national, long-term surveys for trans women, which are important to understand unique health risks for trans women, informing health programs for them, and understanding how their health and social experiences change over time.

See if you're eligible

Complete our short screening tool to find out if you're eligible to participate.

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More information about ENCORE

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FAQs Page 1

What is ENCORE?

ENCORE is a study exclusively for trans women and trans feminine people in the US and Puerto Rico. ENCORE (IRB00355445) is led by a team of health, research, and trans-led community organizations, including The Black Transgender Advocacy Coalition, Trans Solutions Research & Resource Center, Arianna’s Center, Johns Hopkins School of Public Health, Duke University, Callen-Lorde Community Health Center, Emory University, University of Miami, and University of California San Diego. Our goal is to better understand the social, health, and HIV-related experiences among transgender women and transfeminine people. Participating in the study involves completing a short survey and HIV testing. We offer options to participate remotely or in-person in select cities. We'll check in with you approximately every 6 months for up to 2 years. If you're interested in participating, contact us here. Thank you for considering joining us in this important study.

Se habla español?

Sí! Haga click aquí para acceder el sitio en español.

What do I need to do to participate?

If you are eligible and consent to the study, you will complete a survey online and provide a blood specimen (drops from finger-prick) using a HIV home kit. Select cities have in-person options for completing a survey and a HIV home kit.

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What do I get for participating?

There may be no direct benefit to you for participating. However, we hope the knowledge gained in the study may help improve services and programs for transgender women. We provide the following in gratitude for your time and hopes that this study can be beneficial to you and others who participate

Incentive for participation in the study. You can earn up to $160 per year of participation.
List of resources and connection to a national and global locator for gender-affirming services.
Regular HIV testing.
Testing for HIV and sexually transmitted infections offered for free and outside of the study (i.e., not required for participation) to participants who request the home kits.
Regular newsletters and other activities to keep you updated and get to know our team.

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What if I do not like blood or cannot provide a specimen?

No problem! We have options - give us a call and we will find another option for you.

7

What will happen to my answers, information, and HIV home kit results?

We protect it! Here is how:

Your survey responses and HIV home kit results are stored in a separate, secure, and private file. The file is anonymous. The file does not contain your name or anything that could identify you.
Any identifiable information (name, phone number, etc.) that we use to contact you will be stored in secure file that is completely separate from the other information that you share with us. Only staff who have had appropriate training and need to contact you have access to your identifiable information.
We have legal protection that allows us to refuse to share your identifiable information, even if requested through legal means. This legal protection is called a Certificate of Confidentiality.
All of our systems are secure and all data is encrypted. Encryption allows information to be hidden so that it cannot be opened or read without special knowledge (such as a password).

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What about my name? I have not changed it officially. Can I use my name, or do you need to know my legal name or deadname?

ENCORE always chooses what is most affirming while keeping you safe and respecting your privacy. To respect your privacy, we will ask you for a name for personal communication, and separately ask for a name to be displayed on the kits we mail you. We do not need your legal name or deadname.

9

What happens with my blood sample after the HIV home kit is processed by the lab? Will my DNA be stored?

Your DNA and blood sample will NEVER be stored in this study. The blood sample is immediately destroyed using formal laboratory processes once the HIV home kit processing is completed by the laboratory.

10

What are hubs?

Our hubs are gender-affirming research or clinical sites where you can go to complete any study activity or access associated services. They are located in New York City, Atlanta, Baltimore, Miami, Raleigh-Durham, and San Diego. You do not need to go to these hubs, but you are welcome any time for us to support you in this study and our teams would love to meet you!