Why is this study being done?
The purpose of this protocol is to collect a range of medical, familial, and genetic information on children who have been diagnosed with SCN8A. We will study this data to look for positive patterns in treatment options, changes in development, and patterns in physical characteristics.
By participating in this study, you will be asked to complete the following survey. This survey should take about 20-30 minutes to complete. This data will be used to study SCN8A. We may re-contact you to clarify any answers you provide on the survey. Other personally identifying information will not be public or used in any publications or presentations. Only Dr. Hammer and his research staff will have access to this identifiable data.
There is little risk to participating in the research. There is the chance that your data might be lost, however efforts will be made to ensure your data remains confidential, and only individuals associated with this project will have access to your identifiable data. Please note, we will use the data collected in this research for future research on epileptic encephalopathy. Anonymous data may be shared with collaborators for this purpose.
You may not benefit from participating in this study. However, your data may help further research in the study of SCN8A mutations. Your involvement in this research is completely voluntary and you can choose to withdraw at any time. If you wish to withdraw from this study, please contact Dr. Hammer at 626-0404 or at email@example.com. If you would like to talk to a clinical coordinator while you fill out your survey, please contact Alixx Encinas at firstname.lastname@example.org.
An Institutional Review Board at the University of Arizona has reviewed and approved this project. For questions about your rights as a participant in this study or to discuss other study-related concerns or complaints with someone who is not part of the research team, you may contact the Human Subjects Protection Program at 520-626-6721 or online at http://rgw.arizona.edu/compliance/human-subjects-protection-program.
By completing this questionnaire, you are allowing your data to be used for research purposes.