For Patients

KCNT1 International Registry

Welcome!

The KCNT1 International Registry is a comprehensive database hosted by the National Organization for Rare Disorders (NORD®) on their IAMRARE® platform and dedicated to individuals affected by KCNT1-related disorders. KCNT1 mutations are associated with a spectrum of conditions, including epilepsy, neurodevelopmental disorders, and intellectual disabilities. This registry serves as a vital hub for collecting and organizing essential information about individuals with KCNT1 mutations, fostering collaboration between patients, caregivers, and researchers.

Purpose of the Registry

Our registry aims to advance scientific understanding and therapeutic developments for KCNT1-related disorders. By gathering detailed information on symptoms, treatment experiences, and genetic profiles, we empower researchers and healthcare professionals to identify patterns, explore potential interventions, and improve patient outcomes. Participants play a crucial role in driving research forward by contributing their valuable data to the collective knowledge pool.

Join the KCNT1 International Registry

By joining our registry, you become an integral part of a community working towards a better future for KCNT1-affected individuals. Your participation directly contributes to scientific advancements, potentially leading to improved diagnostic tools, treatment options, and a deeper understanding of KCNT1-related disorders. Together, we can build knowledge one piece at a time.

The KCNT1 International Registry is sponsored by the KCNT1 Epilepsy Foundation.

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 KCNT1 International Registry serves to:

Support the design of clinical trials that explore new rare disease treatments;
Describe the people who have KCNT1-related disorders and to better understand the variability and stages of individuals affected by KCNT1;
Understand how KCNT1-related disorders change over a person’s lifetime;
Learn about clinical practice patterns and variations over the course of treatment;
Help to develop best practices, management guidelines, and recommendations so that clinicians can know how to give the best care to improve the quality of life and outcomes of people with KCNT1-related disorders; and
Identify people with KCNT1-related disorders who might be willing to take part in other research studies or clinical trials. You will be able to choose whether you want to hear about these other studies.

What types of data will be collected in the KCNT1 International Registry?

The KCNT1 International Registry collects data on the following topics:

Socio-demographics
Medical history and diagnostics
Treatment and disease progression
Management of care
Quality of life
Economic impact

Is the data secure?

The KCNT1 International Registry follows strict government guidelines to assure patient information is protected. The platform is served over HTTPS, which means that the data is encrypted when being sent from the user’s browser to the NORD servers. The data is also kept encrypted in the NORD database. Communications between the registry platform application server and the database are also encrypted. As with any information one provides electronically, there is a very rare chance that privacy could be compromised. However, the registry and the security measures minimize the chance of this occurring.