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Crowdsourcing autism data: Stanford project aims to highlight gaps in diagnosis and therapy

How common is autism? Since 2000, the U.S. Centers for Disease Control and Prevention has revised its estimate several times, with the numbers ticking steadily upward. But the most recent figure of 1 in 68 kids affected is based on data from only 11 states. It gives no indication of where people with autism live around the country nor whether their communities have the resources to treat them.

That's a knowledge gap Stanford biomedical data scientist Dennis Wall, PhD, wants to fill — not just in the United States but also around the world. A new paper, published online in JMIR Public Health & Surveillance, explains how Wall and his team created GapMap, an interactive website designed to crowdsource the missing autism data. They’re now inviting people and families affected by autism to contribute to the database.

In our press release, Wall explains why the work was needed:

There is a growing imbalance between the number of people who need autism care and the number of places that can provide care... It’s a geographic distance problem. We need to quantify, in real numbers, the geographic disconnect between people and treatment options so that we can see where the gaps are.

The pilot phase of the research, which is described in the new paper, estimated that the average distance from an individual in the U.S. to the nearest autism diagnostic center is 50 miles, while those with an autism diagnosis live an average of 20 miles from the nearest diagnostic center. The researchers think this may reflect lower rates of diagnosis among people in rural areas.

“We really need to see where the imbalances are and how big they are as the first step to creating change in the health care system,” Wall said.

The pilot phase was completed using estimates of where people with autism live, but the team now wants to replace those estimates with crowdsourced data submitted by people around the world.

Data submitted to GapMap will be stored in a secure, HIPAA-compliant database. In addition to showing where more autism treatment resources are needed, the researchers hope the project will help build communities of families affected by autism and will inform them of treatment options nearby. Families will also have the option of participating in future autism research, and the scientists plan to add more features, including the locations of environmental factors such as local pollution, to understand if they contribute to autism.

Previously: Google Glass may help kids with autism recognize emotions, New Stanford research offers hope for faster autism diagnosis and Girls with autism show behavior and brain differences compared to boys, Stanford study finds
Photo courtesy of JMIR Public Health and Surveillance

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