STUDIES AND RESEARCH
CONTRIBUTE TO THE RESEARCH
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Opportunities exist to advance our knowledge and understanding of DeSanto-Shinawi Syndrome. The lab at Washington University is collecting data for their research and The DESSH Foundation supports their work. We have created a form for patients to seamlessly share their information with these researchers. We hope you will consider contributing by providing your patient medical information.
A guide for DESSH families
Dr. Amanda Smith, a member of The DESSH Foundation's Medical Advisory Board and researcher at Washington University, authored this guide with helpful information about how patient data is used in clinical and pre-clinical research.
A consent to release your medical information
Should you wish to share your information with the researchers at Washington University it is imperative that you sign and attach this consent to the Medical Questionnaire.
A consent to release your photos/videos
Because a feature of DeSanto-Shinawi Syndrome is facial dysmorphisms, photos are beneficial to the research team. Should you choose to upload photos to the Medical Questionnaire, a signed media release form must accompany them.
PUBLISHED ARTICLES
OMIM
EUROPEAN JOURNAL OF HUMAN GENETICS
