Registry Information

Help in Creating a Research Registry Account for Your Child

How to Enroll & Consent in the Research Registry

The Foundation has health surveys for our KCNT1 families which are hosted on a technology platform by LunaDNA. In order to take the surveys you will need to setup a private account for your child. Below you will find images of the screens with step by step instructions on how to enroll. Some of the features may have changed. If you need assistance please email us to setup an appointment, info@kcnt1epilepsy.org

LunaDNA Enrollment/Setup Screens with Instructions and Consent Agreement Form

These documents have been translated from the original English version using online translation software and may have some inaccuracies. The Enrollment Form should be used to guide you through the registry enrollment process. Note some of the pages may have changed. Stay tuned for updates in 2022.

Arabic عربى

• Enrollment Form تعليمات التسجيل
• Patient Handout

Chinese (Simplified) 中国人

• Enrollment Form 报名表
• Patient Handout

Dutch

• Enrollment Form Instructies voor inschrijving
• Patient Handout

English

• Enrollment Form
• Consent Agreement
• Patient Handout

French (Canadian)

• Enrollment Form consignes d’inscription
• Consent Agreement accord de consentement
• Patient Handout

French Français

• Enrollment Form consignes d’inscription
• Patient Handout

German Deutsche

• Enrollment Form Enrollment Form
• Informationen zum Patienten

Greek Ελληνικά

• Enrollment Form οδηγίες εγγραφής
• Patient Handout πληροφορίες ασθενούς

Hebrew עִברִית

• Enrollment Form הוראות הרשמה
• Patient Handout מידע על המטופל

Hindi हिंदी

• Enrollment Form नामांकन निर्देश
• Patient Handout रोगी के बारे में जानकारी

Italian

• Enrollment Form Istruzioni per l’iscrizione
• Patient Handout Informazioni per il paziente

Japanese 日本

• Enrollment Form 登録手順
• Patient Handout 患者情報

Polish Polskie

• Enrollment Form instrukcje rejestracji
• Patient Handout Informacja o pacjencie

Portuguese (Brazil)

• Enrollment Form instruções de inscrição
• Patient Handout informação do paciente

Spanish

• Enrollment Form instrucciones de inscripción
• Patient Handout Información del paciente

Urdu اردو

• Enrollment Form اندراج کی ہدایات
• Patient Handout مریض کی معلومات

As a member of the KCNT1 Epilepsy Foundation’s research community, you consent to share your/child’s health data for research. The data is kept private and secure for our children and families. People who carry a KCNT1 mutation but have no symptoms are welcome to participate. There is no cost to participate and we have volunteer parents from the KCNT1 community who can help you through the process.