Self-Ti

a group of trans and gender diverse people smiling at the camera

OUTpatients is proud to support Self-TI, a research study looking at self-testing for the human papilloma virus (HPV) in the transgender community.

This webpage contains all of the information you will need to learn about the Self-TI study and decide if you want to take part.

On this page you will find the information for participants, guides to self-sampling, and and how to contact the research team.

Don’t forget to come back this page when the study is finished to hear about the results and how the findings can improve screening for the transgender community.

About Self-Ti

It is not known if transgender people are at increased risk of high-risk HPV and its associated cancers when compared to cisgender people. There is also little knowledge about HPV in the vagina of transgender women.

In the Self-TI study, we want to find out how common high-risk HPV is in transgender people in different parts of the body.

People taking part will take swabs from the vagina and anus, provide a urine sample, and use a mouthwash. Transgender men and non-binary people with a cervix will also have an extra swab taken by a doctor or nurse as part of their routine cervical screening. This is to see if the self-swab is as good as the one from the doctor or nurse.

People taking part will also fill out an online survey about how easy of self-sampling was for them, how they felt about, and how it compared to sampling by a doctor or nurse.

Self-TI will help us to learn how common HPV is in the transgender population and plan further research and community support. It will also help healthcare services make decisions about HPV screening can be best provided to the transgender community.

What is HPV?

Human papillomavirus (HPV) is a very common virus.

It is estimated that around 80% of us will have HPV at some point in our lifetime. For most people, the infection is able to naturally resolve and the body clears the virus. However, there are some cases when this does not happen, leading to increased risk of certain cancers.

Certain types of HPV that we call ‘high-risk’ are associated with various cancer types including head and neck, anal, vaginal, vulval, cervical and penile cancers.

Participant information

This study is open to:

 

The study will ask you to do different screening tests depending on whether you were registered male or female at birth, so please select the information that is right for you.

How to take part

If you would like to participate, please book one of the following appointments at the clinics below and mention that you would like to join the Self-TI study:

  • Trans men and non-binary people with a cervix can book via their cervical screening
  • Trans women and non-binary people can book via a sexual health screen

The clinics taking part in Self-TI:

CliniQ and Clinic-T are established providers of trans-specific healthcare. We have provided additional training to the Ambrose King Centre.

Self-sampling guides

Participants can watch the self-sampling instruction video and download a self-sampling information sheet.

 

If you have any difficulties with self-sampling, please contact the clinic where you are taking part in the study:

For CliniQ: [email protected]

For Clinic-T: [email protected]

For Ambrose King: [email protected]

 

Meet the study team

Self-TI is a joint project between Queen Mary University of London (UK) and the National Cancer Institute (US). Self-TI has been co-developed with a community advisory board of trans and gender diverse people and OUTpatients.

Alison

Dr Alison May Berner is an Academic Clinical Lecturer in Medical Oncology at Queen Mary University of London (QMUL) & St Bartholomew’s Hospital and Specialty Doctor in Adult Gender Identity Medicine at Tavistock and Portman NHS Foundation Trust. She studied undergraduate medicine at University of Cambridge and University College London. She qualified in 2012 and has undertaken her postgraduate training in hospitals across north-east London. She completed an MSc in Genomic Medicine at Imperial and a PhD at Barts Cancer Institute, QMUL. 

She has conducted a number of research projects at the interface of oncology and LGBTQ health, with a particular interest in screening. In 2022, she founded the UK Cancer and Transition Service (UCATS), a specialist service to integrate oncology and gender affirming care.

Sarah smiling directly to camera. She wears glasses, has long brown hair and is wearing a white shirt

Dr. Sarah S. Jackson was born and raised in Washington, DC. She earned a B.A. from Grinnell College, an M.P.H. from the George Washington University, and a Ph.D. in Epidemiology from The University of Maryland, Baltimore. In 2018, she started at US National Cancer Institute  within the Division of Cancer Epidemiology and Genetics as a postdoctoral fellow in the Infections and Immunoepidemiology Branch, where she is now a Stadtman tenure-track investigator. Currently, she investigates sex differences in cancer incidence and survival, and cancer risk factors, cancer screening, cancer incidence and outcomes among transgender and gender diverse individuals.

Stewart

Stewart O’Callaghan is the multi-award winning Founder and CEO of OUTpatients, the UK’s LGBTIQ+ cancer charity. Building upon their personal experience of cancer and its services, the charity is proudly patient-led and working to improve the representation, information and support available to LGBTIQ+ people affected by cancer. With their expertise in cognitive psychology research and LGBTIQ+ health activism, they guide the Self-Ti study and its reach into the LGBTIQ+ community.

Reducing cancer risk

We want to make sure anyone taking part in this study knows how to lower their risk of human papillomavirus (HPV). More information about HPV can be found here.

High-risk types of HPV (hrHPV) can lead to cancer. More information on what you can do to lower your risk of these cancers can be found below:

Other resources you might find useful from OUTpatients include:

Support for gender dysphoria or distress

We appreciate that the sampling procedure or study information might trigger gender dysphoria or other types of distress, especially if you have experienced previous trauma.

A list of local and national services where you can seek support for this can be found on the Gender Construction Kit website

Other services include:

  • The Beaumont Trust who offer help those who are troubled in any way by gender dysphoria.
  • CliniQ who offer counselling in addition to sexual health screening

If you are experiencing thoughts about harming yourself, please contact your GP, local crisis line or your nearest accident and emergency department.

You can also contact Samaritans free 24 hours a day on: 116 123 

Get in touch

General queries or complaints about the study should be directed to: [email protected]

If you are a participant and you need support with self-sampling or completing your questionnaire, or you would like to withdraw from the study, please contact the clinic where you were recruited on one of our dedicated emails:

For CliniQ: [email protected]

For Clinic-T: [email protected]

For Ambrose King: [email protected]

self-ti logo with a sample tube surrounded by stars in trans and non-binary flag colours
National Cancer Institute logo

The donation link below is for OUTpatients and is not associated with the Self-Ti study.