Background: The Centers for Disease Control and Prevention estimates that 1 in 88 children have been diagnosed with some component of autism spectrum disorder (ASD). ASD describes a group of symptoms associated with abnormal brain development. Previously, researchers established the Interactive Autism Network (IAN), an internet-based registry. The network, however, required parents to self-register their child and fill out forms.

What’s new: Kaiser Permanente and Harvard Pilgrim are pooling data retrieved from electronic medical records to create one of the largest autism database to date. Using these resources, the health care providers identified 20,000 people with ASD. Unlike similar networks, this database contains standardized information that will aid researchers as they study the disorder.

Why it’s important: The clinical and scientific community can use this data to understand the prevalence of ASD and current methods used to treat symptoms. In addition, researchers could comb the database to recruit individuals for clinical trials. Finally, organizations hope to develop autism awareness campaigns to help educate underserved communities about the condition. The database will not become available to researchers until privacy issues associated with medical records are resolved.

Parent’s Corner

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