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NATURAL HISTORY

Natural History Study

Description
Before we can dive into drug trials, we have to understand the disorder itself. In order to do this, researchers must create a natural history trial that looks at the heterogeneity or commonalities of Angelman syndrome so that the drug companies can target the biomarkers/outcome measures they can best treat.  The idea of natural history studies is to learn about how Angelman syndrome affects people throughout their lifespan – what it is like in a newborn, a child, a teenager, an adult, an elderly person.  Through natural history studies, we can learn if there are certain genotypes that are different from others or certain people who are affected differently by AS.

Below is a gallery of Elizabeth McNeil’s presentation from the 2017 A-BOM meeting in Phoenix, AZ.

Relevant Studies

COMING SOON

Pilot Projects Developed by A-BOM:

*coming soon*

Developments with ICD-10 Code

Dr. Wen-Hann Tan’s presentation on Angelman Syndrome to ICD-10 Coordination & Maintenance Committee (9/13/17)

Dr. Terry Jo Bichell’s comments on Angelman Syndrome to ICD-10 Coordination & Maintenance Committee (9/13/17)