Participate in qualitative research on health, well-being and experiences

Do you have lived experience of an innate variation of sex characteristics? You might have a variation yourself, or you might be a parent or carer. We know that different people have different preferences for language. You might use other language to describe your trait, including a specific diagnostic term or the terms “intersex variation”, or “differences of sex development”.

Interconnect would like to invite you to take part in a study seeking to improve understanding of the health and well-being needs (including unmet needs) and experiences of adolescents and adults with innate variations of sex characteristics, and their families.

Interconnect Health Research is a five-year project funded by the Medical Research Future Fund, working to develop co-designed, integrated, person-centred models of care to improve the physical and mental health of people with innate variations of sex characteristics (intersex variations/differences of sex development).

Your involvement in this research study will involve an interview of approximately 1-1.5 hours in length, which will take place over the phone, via teleconferencing with video, or face-to-face (if requested and close to one of the participating universities). Your communication preferences will be respected.

This is the first stage of a series of studies, so there will be multiple opportunities to participate. Future activities will include a national survey of people with innate variations of sex characteristics in late 2026. Participating in this first stage will contribute to the shaping of this later work.

Interconnect are looking to recruit people who:

• Were born with an innate variation of sex characteristics, and meet the following criteria:
  • Are 16 years or older.
  • Are confident and comfortable communicating in English.
  • Are located in Australia. However, if you are under 18 you need to live in New South Wales, Tasmania, Western Australia, or Victoria.
• Are the parent or guardian of someone with an innate variation of sex characteristics, and meet the following criteria:
  • Are 20 years or older.
  • Are confident and comfortable communicating in English.
  • Are located in Australia.

You will be compensated with a $90 GiftPay card for your time.

A full description of all research activities, including any risks, harms or discomforts that you may experience while participating in this research is available for review in the appended Participant Information Statements.

To register your interest in taking part in the research, or if you have any questions about the research, please contact Dr Kate Burry (Interconnect Post Doctoral Research Fellow) on k.burry@unsw.edu.au or via +61 2 9348 2401.

Read more on the Interconnect website.

A note on competing interests: Dr Morgan Carpenter and Bonnie Hart are investigators on the Interconnect site. Multiple other board and staff members have also joined the community reference group following an open expressions of interest process.