Project 2 Quarterly Update - Oct 2026: Listening to the X&Y Chromosome Variation Community

Our project aims to understand what research topics and outcomes matter most to people with X&Y chromosome variations and their families. By partnering directly with individuals with lived experience, we hope to ensure that future research reflects the priorities of the community it is intended to serve.

Over the past few months, we have made important progress. Having formed our Lived and Living Experience Council, a group of five individuals who represent a broad range of perspectives from across the X&Y chromosome variation community, we have begun to meet and make progress on the project. We have met a total of four times, as of this month.

We have also developed and refined a draft of our first Delphi survey. A Delphi survey is a structured process used to gather feedback and build consensus across a large group of community members. In our project, the survey will help identify the research questions, outcomes, and areas of life that the X&Y chromosome variation community considers most important. The draft survey has been reviewed by our Lived and Living Experience Council and their feedback is currently being incorporated. By working this closely with our community partners, we hope to create a survey that accurately captures the perspectives, priorities, and experiences of people with X&Y chromosome variations.

We're also excited to share that our project officially has a new name! Chosen by our Lived and Living Experience Council, Project 2’s new name is the XY Voices Project. If you'd like to learn more about the project or get involved, please reach out to Stephanie Ndukwe (stephanie.ndukwe@uth.tmc.edu). Stephanie would be happy to connect with you and provide additional information.

Together, we are building a research agenda informed by the people who know this community best: people with lived experience.