The KAT6A/KAT6B Patient Registry is a comprehensive and secure database, compliant with U.S. Health information privacy laws and FDA regulations.
The purpose of the KAT6A/KAT6B Patient Registry is to
- Document and increase understanding of the full range of KAT6 characteristics
- Enable researchers to identify trends that generate new insights into KAT6A and KAT6B syndromes, and identify areas for additional study
- Facilitate partnerships with university researchers and pharmaceutical companies
- Guide the development of standards of care
- Expedite the completion of KAT6 clinical trials
- Allow participants to store their KAT6 medical data in one place
- Accelerate solutions for KAT6A and KAT6B syndromes
We invite you to register and participate today!
Data from the registry can be used in de-identified aggregate form to help advance the understanding and treatment of KAT6A and KAT6B syndromes.
You will be asked to provide details on topics such as developmental milestones, medications, behavior and other aspects of KAT6 syndromes. Depending on your personal story, the registry may take half an hour to one hour to complete. However, you do not need to complete the entire registry in one sitting.
Please refer to this FAQ document to learn more about the registry.
Learn how to register for the KAT6A/KAT6B Patient Registry here.
If you have any questions while completing the registry or encounter any challenges, please contact: kat6aregistry@gmail.com
