PROJECT SUMMARY This proposal seeks to address gaps in Intersex and Variations of Sex Development (I/VSC) health by investing directly in Intersex-led, grassroots research efforts. The proposed study represents a strong collaboration between members of the Intersex Research Coalition (IRC) and researchers who lead the EDIT and ADVOCATE Programs within Northwestern University‘s Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH). The IRC is a coalition of community partners, medical students, Intersex activists, physicians, and public health professionals who are interested in learning more about what it means to deliver affirming care to I/VSC people. The EDIT and ADVOCATE Programs both are dedicated to advancing community-led research that promotes intersectional sexual and gender minority (SGM) health equity. We recognize that community participatory action research is a pathway to change in policies and practices that center intersectional equity for I/VSC people. In brief, we will recruit 200 I/VSC individuals diverse in race, ethnicity, and gender to complete a survey to elicit feedback on I/VSC health research priorities, experiences of erasure and affirmation within sex, sexual orientation, and gender identity (SSOGI) measurement in I/VSC populations, and alcohol use. Qualitatively, we will conduct in-depth interviews with up to 20 I/VSC participants to identify what existing measurement tools have been used in I/VSC populations, shortcomings of these measurement tools, what SSOGI information I/VSC people are willing to share in different settings, the nuance of intersex vs. VSC specific language, and future directions for improved I/VSC population measurement. The supplement will apply minority stress, intersectionality, and life course theoretical frames and use participatory action research methods to ensure that future I/VSC research is more effectively positioned to be affirming, contextually valid, meaningful, and positively impactful to multiply minoritized I/VSC populations. This proposal leverages the strong foundation for interdisciplinary collaboration, community insight, and effective dissemination established within Project Recognize, as well as our team’s clear and unique insights into the current gaps and opportunities in SSOGI measurement that are also responsive to the NASEM report’s call to measure I/VSC populations. Overall, our interdisciplinary team of investigators, mixed-methods strategies, and the foundation of community engagement and trust on which the parent grant is built support feasibility of the completion of all study aims and objectives. This project will result in the development of measures that are affirming, reliable, and valid in diverse I/VSC populations across multiple contexts. Future adoption of these measures in public health research will yield the first affirming population assessments of I/VSC health and inform a community-led, evidence-informed research agenda to pave the way forward for I/VSC health equity.

PROJECT NARRATIVE Our collaboration of diverse researchers, clinicians, and community members seeks to better understand the health research needs and priorities of intersex and variations of sex characteristics (I/VSC) communities: Existing models of health information and data collection completely omit I/VSC populations, inaccurately assess I/VSC status, or fragment the population by diagnoses. There is a dearth of literature that explores the social behavioral aspects of the lives of I/VSC people (e.g., alcohol use, depression), and little is known about the disparities of these factors among I/VSC individuals who are also racial/ethnic, sexual, or gender minorities. This supplement study can be a model of community building and healing as we leverage the tenets of participatory action research (PAR), grounding our work in community-based needs and emphasizing collective action, leading to community transformation and social change.