Seizure and Epilepsy Survey
Study Conducted By
The CASK Gene Foundation
About the Study
The CASK Gene Foundation has been contacted by multiple researchers who are interested in learning more about the seizure and epilepsy-related conditions that can be related to CASK-gene mutation.
The purpose of this study is to gather data about how many people with CASK gene mutations either do or do not have related seizures or epileptiform activity in their brains, and to learn more about those conditions if they are present.
Format(s)
Online Survey
Eligibility
To be eligible for this study, survey respondents should either be an individual with a CASK gene mutation, or be the primary legal guardian and caretaker of an individual with a CASK gene mutation. This mutation must be genetically confirmed, and not just suspected. We are seeking responses from any and all CASK cases, whether they have seizures or not.
Benefits
There is no direct benefit for you or your child expected as a result of participating in this study. However, information obtained in this study will be made openly available to participants upon completion of the study. The information will also be of benefit to the research community by helping to generate better understanding of CASK-Related Disorders. This greater understanding could lead to improved quality of care and/or new treatments for the condition in the future.
Risks
The minimal, but potential, risks involved in participating in this study include possible loss of confidentiality (confidentiality will be protected to the full extent required by U.S. law)
Participation
In order to complete this survey, you will need to have detailed knowledge of the medical history of the person with the CASK gene mutation, including any symptoms and diagnoses. This study is considered preliminary, and will not require medical documentation to verify the answers, though such documentation would be welcome as an optional feature. Taking part in this study is voluntary. You may choose to take part in the study and later change your mind and withdraw your child’s responses from the study. You are free to not answer any questions or withdraw at any time. Your decision will not change any present or future relationships with the CASK Gene Foundation or its affiliates.
How the Data Will Be Used
IThe data collected with this survey will be collected and stored by the CASK Gene Foundation, in a similar manner to the registration data regarding CASK cases. Answers will be collected using cloud-based Google G-Suite services, and then the data will be moved to a non-networked hard drive. Individual responses will not be shared outside the foundation, and data results will be published as counts, percentages, and/or charts for researchers and the general public to view and reference.
Costs and Compensation
This survey is being implemented by volunteers, and there is no cost for participants, or for the CASK Gene Foundation. There is no compensation available to respondents for their time and participation.
How to Enroll
This study may be accessed directly at the following link: