KCNT1 Research Registry
The KCNT1 Research Registry is critical to the KCNT1 Epilepsy Foundation’s research strategy.
Please log in and take the surveys by January 30th, 2024 in order to include your data in our publication.
By sharing information about your family’s experience in our secure database, you can help improve our understanding of KCNT1-related epilepsies and power the next generation of KCNT1 research.
How do I participate?
Getting started with the registry is easy! To participate, follow these three simple steps.
Step 1: Access the KCNT1 Research Registry on the Luna platform.
Existing users should check to make sure that they have a Luna account set up for their child with KCNT1, as well as an account for themselves. A video review is here.
New users should create a Luna account. You can either create an account on behalf of your child with KCNT1, or, if you are an adult with KCNT1-related epilepsy, create an account for yourself.
Once in Luna, COPY YOUR PARTICIPANT ID number and email it to Sarah@kcnt1epilepsy.org
Looking for support? Check out our registration guide for new users and our registration guide for existing users.
Step 2: Join our KCNT1 Longitudinal Study and take the Demographics and Genetics Survey.
After your Enroll and Consent in the longitudinal study, click Prerequisite and then click Data Requests to go to the surveys. The Demographics and Genetics survey is the first survey in our new longitudinal study. You will also see a Family Impact scale. New surveys will be available monthly.
For more information about how to join, see our guide. This survey is available in English, French, German, Italian, Portuguese, Spanish and Swedish. (Note, the Swedish version is temporarily available under the NL language tag.)
Step 3: Opt-in to sharing your contact information with the KCNT1 Epilepsy Foundation.
Sharing your contact information with the Foundation helps us to connect the dots across multiple research studies, so that we know which studies you are participating in and can provide you with easy-to-access, personalized information about new and existing research opportunities.
For more information about how to share your contact information see our guide.
Need help? Please contact us at info@kcnt1epilepsy.org.
What is the KCNT1 Research Registry?
The KCNT1 Research Registry is a patient-centered repository of information collected directly from families via KCNT1-specific studies and questionnaires. Registries are a critical element in studying rare diseases, especially those that are newly discovered and not well understood like KCNT1-related epilepsy. The KCNT1 Research Registry serves to fully describe the symptoms of this disease and how it varies from patient to patient, and to help us understand the course of the disease from point of onset to later in life.
Why should I participate in the KCNT1 Research Registry?
The medical community is still learning how KCNT1-related epilepsy progresses from infancy to adulthood and developing best practices for treatment. One of the best ways to make rapid progress in our own understanding and to aid the medical community is to participate in KCNT1 studies and questionnaires. With your participation and commitment to providing regular updates, we will move closer to our goal of predicting the factors that lead to an improved quality of life.
Who is eligible to participate?
The registry is open to individuals diagnosed with KCNT1-related epilepsy, including both US and non-US KCNT1 families. The registry interface is currently available only in English, with consent documents available in English, French, German, Italian, Portuguese, Spanish and Dutch, and some surveys are available in English, French, German, Italian, Portuguese, Spanish and Swedish . Please create no more than one account per individual diagnosed with KCNT1-related epilepsy.