Project 2 Update: 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. Following an extensive interview process, we invited five members to join our Lived and Living Experience Council, representing a broad range of perspectives from across the X&Y chromosome variation community. Each member brings personal experience with a chromosome variation and a shared commitment to ensuring that community priorities help guide this work. In June, we held our first council meeting, providing an opportunity for council members and the research team to get to know one another, discuss the project's goals, and begin shaping the work ahead together.

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 is currently being reviewed by our Lived and Living Experience Council, whose feedback is helping us ensure that the questions are clear, meaningful, and grounded in the experiences of the community.

Getting the survey right is essential. The way questions are written can influence how people understand and respond to them. By working closely with our community partners, we aim 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 a new project name is coming soon! 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.