Kabuki Syndrome Foundation Launches Research Registry

NORTHBROOK, IL, UNITED STATES, October 1, 2026 /CourierPR/ -- The Kabuki Syndrome Foundation (KSF), a global hub for research, collaboration, and community, has launched Kabuki INSIGHTS, a patient-powered research platform designed to support research and treatment development for Kabuki syndrome. Since its founding in 2018, KSF has evolved from a research funder into the global hub for Kabuki syndrome research, collaboration, and community. The organization has awarded 28 research grants in seven countries, investing more than $2.8 million in treatment research while building a collaborative network of more than 260 clinicians, researchers, and industry professionals dedicated to improving outcomes for people with Kabuki syndrome.

Kabuki INSIGHTS, a registry designed to collect information through online surveys and, optionally, electronic health records, is designed to generate the real-world evidence researchers need to better understand Kabuki syndrome, identify unmet needs, strengthen future clinical trials, and support future treatment development. By bringing together the lived experiences of individuals and families with clinical information, KSF is helping build the research infrastructure needed to support scientific discovery, improve understanding of Kabuki syndrome, and prepare the community for future clinical trials and therapies.

The registry, which opened to enrollment on October 1, 2026, aims to build a picture of the condition across childhood, adolescence, and adulthood, knowledge that can help shape future research priorities and treatment development. Researchers also see Kabuki INSIGHTS as an important step toward strengthening treatment development for Kabuki syndrome, as well as a means of generating scientifically valid and objective real-world evidence in rare disease.

KSF is guided by a Steering Committee convened by the organization, bringing together scientific, clinical, community, and industry expertise to help ensure the registry is well designed, responsibly governed, and useful for future research. The launch of Kabuki INSIGHTS marks the foundation's commitment to fostering a global community of families, clinicians, and researchers to improve the lives of people with Kabuki syndrome.