Patient registries are one of the most effective research tools for studying and understanding underrepresented populations and rare diseases. They support quality measurement, provide feedback to clinicians and institutions for quality improvement, facilitate clinical research, and enable evaluation of healthcare access and disparities. Dr. Carly Kelley (mPI), founder and co-Director of Duke’s AGM clinic within Duke’s Division of Endocrinology, recognized the urgent need to understand Duke transgender and non-binary (TGNB) patients patterns in healthcare needs, differences in needs by intersectional identities, and the effects of gender-affirming medical care on health outcomes and thus advocated for and received departmental support to develop a preliminary Duke AGM Registry from existing and prospective data added to REDCap. The registry will capture demographic, clinical, and patient-reported outcomes over time that address key gaps noted in the current scientific literature. A patient-centered approach is emphasized throughout, ensuring that the research team has thorough consent (from patients), input (focus groups), and guidance (patient and stakeholder advisory boards) from within the TGNB community and related stakeholders. The research team will actively reach out to similar gender medicine clinics across the U.S. to build the framework for ultimately expanding the registry and build its capacity to expand the knowledge base in a robust manner.
Principal Investigator: Sara Legrand
CHPIR Staff: Andrew Weinhold and Heather Parnell