The purpose of this Registry is to update the incidence rate of KBG Syndrome with greater accuracy. This is an internal data collection project being conducted by the KBG Foundation. You are invited to participate in this project because you have an official diagnosis of KBG Syndrome either as a patient or a caregiver.
Your participation in this project is voluntary. You may choose not to participate. If you decide to participate, you may withdraw at any time. If you decide not to participate in this project or if you withdraw from participating at any time, you will not be penalized.
The procedure involves filling an online survey that will take approximately 8 minutes. Your responses will be confidential and we do not collect information such as IP address.
We will do our best to keep your information confidential. All data is stored in a password protected electronic format. To help protect your confidentiality, the questions will not contain information that will personally identify you by default. You may elect to allow your personal information to be used to contact you for follow up research and ongoing surveys. The results of this project will be used for KBG FOUNDATION PURPOSES ONLY. If you so choose, your information will ONLY be shared with vetted Researchers looking to possibly contact you with further questions, to update you about ongoing studies or possible treatments, and eventually provide a de-identified map of the global impact of KBG Syndrome. The KBG Foundation will NOT make your name, or the name of the KBG-affected person available without your written permission.
If you have any questions about this project, please contact firstname.lastname@example.org.
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