About the Study

Angelman Syndrome: Clinical Needs Survey

This study is for children/adults : • Diagnosed with Angelman Syndrome • Who are seen or will be seen at the Angelman Syndrome Clinic at Children's Mercy • Previously enrolled in the Linking Angelman and Dup15q Data for Expanded Research (LADDER) database or who would like to join The goal of the study is to better understand Angelman and Dup15q syndromes. The Clinical Needs Survey will be used as the intake form for the clinic but will be stored in the LADDER database. The Angelman Syndrome Clinic is partnering with LADDER that will allow information about individuals seen at the clinic to be housed in a centralized database. The information held in LADDER is private and no information that could identify a patient or their family is shared with anyone outside the LADDER team. The goal is that information from these surveys will help researchers to create therapies and advance clinical trials more quickly and easily.

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Full Study Name: Clinical Needs of Individuals with a Chromosome 15 Condition