For Researchers

The KAT6A/KAT6B Patient Registry collects disease-specific natural history data about individuals with KAT6A and KAT6B syndromes, with the goal of improving the understanding of these syndromes and informing treatment development. Registry questionnaires were built from common data element standards and cover the following topics:

• Socio-demographics
• Medical history and diagnostics
• Treatment and disease progression
• Management of care
• Quality of life
• Developmental milestones
• Medications
• Behavior and other aspects of KAT6 syndromes

We are interested in sharing our data with you! If you would like access to the KAT6A/KAT6B Patient Registry data for a research project, please contact our registry administrator, The Registry Staff, at registry@kat6.org for more information. Access to KAT6A/KAT6B Patient Registry data is contingent upon project approval by the KAT6A/KAT6B Patient Registry Advisory Board.