For Patients
The KAT6A/KAT6B Patient Registry
Welcome!
The KAT6A/KAT6B Patient Registry is an online registry for people with KAT6A/KAT6B syndromes. It is sponsored by the KAT6 Foundation and hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform. This registry will collect information from participants (or their authorized representatives) who are affected by KAT6A/KAT6B syndromes.
What is a Patient Registry?
A patient registry is a collection of standardized information about a group of patients who share a condition. The information may be used for a variety of purposes such as conducting natural history studies and supporting disease-specific clinical trial recruitment. The KAT6A/KAT6B Patient Registry serves to:
- Support the design of clinical trials that explore new rare disease treatments;
- Describe the people who have KAT6A/KAT6B syndromes and better understand the variability and stages of the syndromes;
- Understand how KAT6A/KAT6B syndromes change over a person’s lifetime;
- Learn about clinical practice patterns and variations over the course of treatment;
- Help develop best practices, management guidelines, and recommendations so clinicians can provide the best care to improve quality of life and outcomes for people with KAT6A/KAT6B syndromes;
- Identify individuals with KAT6A/KAT6B syndromes who may be willing to participate in other research studies or clinical trials. Participation in additional studies is optional.
What types of data will be collected in the KAT6A/KAT6B Patient Registry?
The registry collects data on the following topics:
- Socio-demographics
- Medical history and diagnostics
- Treatment and disease progression
- Management of care
- Quality of life
Is the data secure?
The KAT6A/KAT6B Patient Registry follows strict government guidelines to ensure patient information is protected. The platform is served over HTTPS, meaning data is encrypted when sent from the user’s browser to NORD’s servers. The data is also encrypted while stored in the NORD database. Communications between the registry application server and the database are encrypted as well. As with any electronically submitted information, there is a very rare chance that privacy could be compromised; however, the registry and its security measures significantly minimize this risk.