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Hello, my name is Gabriela de Morales and I am a member of Dr. Hong Li’s research team at Emory University. We are currently conducting a “CTCF study”. The aim of our research is to look at the clinical features (physical signs and symptoms) of individuals that have CTCF variants. Due to COVID restrictions, for now we are moving forward with only two branches of this study. The first is a questionnaire and the second is a photo submission. A positive note is that because these two parts are completely online, we are able to accept participation from individuals from all around the globe that speak English (the reason we need you to speak English is because our consent forms and the questionnaire are in English).
There is also a third branch to this study in which our team is taking blood samples in order to conduct research on specific CTCF variants. We will only ask individuals with certain CTCF variants to participate in this part of the study. The questionnaire is on a secure and HIPAA compliant portal. In it we ask a series of questions about medical and family history. At the end of that same questionnaire we provide a place for photo submission. The purpose of the photo is to create a CTCF profile on the Face2Gene app. We hope that by uploading patient photos to this software we will train the AI software to recognize the facial features of patients with CTCF variants. This would create a “face mask” that can later be used by healthcare providers to recognize and diagnose a patient by their facial features. All of the photos submitted are protected by this portal and are not available for public access. All this is done so that more patients with CTCF variants can be diagnosed more efficiently, so that we can then better understand the needs of a CTCF patient and therefore how we can best serve them. We appreciate any help you can provide us with -whether it is participation or spreading the word on our study. The more patients we can recruit, the more meaningful our research will be. If you are interested, we would like to set up a phone call or Zoom call to discuss more about our research. Please do not hesitate to reach out to our team at: ctcf@emory.edu Find More information at https://med.emory.edu/.../human-genetics/research/index.html Gabriela Valverde de Morales Genetic Counseling 2022 | Emory University School of Medicine Check out the CRD Center at Emory https://www.ctcfemory.com/
Helping me learn and advocate for CTCF Research!Hong Li, MD, Ph.D.
Associate professor, Department of Human Genetics and Pediatrics Emory University School of Medicine Victor G. Corces, Ph.D. Professor, Department of Human Genetics Emory University School of Medicine Hsiao-Lin V. Wang, Ph.D. Postdoctoral Fellow | Victor Corces Lab Emory University School of Medicine Department of Human Genetics Pawel Piwko, Ph.D. Postdoctoral Fellow | Victor Corces Lab Emory University School of Medicine Department of Human Genetics Lynn Chen Woodward Attorney |
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