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Participate in the ‘International SCN8A Registry Research Study’
Survey title: "SCN8A Registry Questionnaire"
What is the International SCN8A Registry?
The International SCN8A Registry is a patient-centered repository of information collected directly from families via a well-designed SCN8A-specific questionnaire. Registries are a critical element in studying rare diseases, especially those that are newly discovered and not well understood like SCN8A. The SCN8A Registry research study 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 the point of onset to later in life.
Why should I participate in the SCN8A Registry research study?
The medical community is still learning how to treat this disease and how it progresses from infancy into adulthood. One of the best ways to make more rapid progress for our own understanding and to aid the medical community is to participate in the SCN8A Registry Research Study. With your participation and by providing regular updates we will build on this progress and move closer to our goal of predicting the factors that lead to an improved quality of life.
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If I participated a previous year, do I need to do it again?
If you have previously participated in the SCN8A Registry, thank you! Our hope is that you will participate in the Registry each year to update any changes that have occurred in your child’s medical or developmental history since the last time you filled out the questionnaire. It is incredibly important to collect longitudinal data, which tracks how SCN8A disorders and treatments affect our children over time. This will allow us to better understand the natural course of the disease and continue to provide critical information to clinicians, researchers and industry partners that are developing new drugs.
Should I participate if my child has passed away?
As a parent who has grieved the loss of a child, I want to offer my sincere condolences. If you receive communication from us after the loss of your child, please know that we want to respect your grieving process. If and when you feel you are ready, we very much welcome your participation in the SCN8A Registry even after the loss of your child. As with all families suffering with SCN8A, we want to learn of your experience and include your child’s journey in the Registry to help other families, clinicians and researchers to better understand this disease in all of its manifestations. Please reach out if we can support you in any capacity. –Michael
What happens after my data are submitted to the SCN8A Registry research study?
Researchers on the project will perform various analyses of the data to discover associations among genetic and symptomatic features of patients in order to fully describe the various manifestations of this disease and to identify better ways to treat patients with different outcomes. Important results coming from these analyses will be made available at SCN8A.net and through peer-reviewed publications to keep you, your doctors and other researchers informed of the latest findings.
How are my data and privacy protected?
An Institutional Review Board responsible for human subjects research at The University of Arizona reviews this research project to ensure it meets all state and federal regulations designed to protect the rights and welfare of research participants. Only Dr. Hammer and members of the research team will have access to your identifiable data. Your identity, or any personally identifiable data, will not be released in publications or presentations on the data.
How do I participate?
By clicking the button below you will be taken to the landing page of the International SCN8A Registry research study through REDCap— a secure web application that is specifically geared to support online data capture for research studies. If you are a returning participant please use the link and/or code sent to you by email. If you did not receive this or need login assistance, please email scn8a.info@gmail.com - we are here to help!
Returning participants will then click the “Returning” Link while first time participants will click the “First Time” link.
Note: Once you have entered all current information in REDCap, it will be saved in a secure database for all future updates.
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