Registry for SETD2 Neurodevelopmental Disorder

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Registry for SETD2 Neurodevelopmental Disorder

Brief description of study

This study involves the collection of data from individuals who have SETD2-neurodevelopmental disorders. By collecting clinical information and administering surveys to affected individuals or their guardians, we hope to gain insight on the disorder. We hope to gather information regarding the syndrome and establish a clinical presentation of associated syndrome through identifying subjects through social media groups related to the specific disorder. All data - clinical, biochemical, radiological, and genetic information from each patient- will be stored in a RedCap database in compliance with HIPPA.

Clinical Study Identifier: s22-00717

Principal Investigator: John G Pappas.

Other Investigator: Rachel Bari Rabin.

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