Autism study conducted entirely online

This article discusses a clinical trial for autism that was done completely online.

UC San Francisco researchers have completed the first Internet-based clinical trial for children with autism, establishing it as a viable and cost effective method of conducting high-quality and rapid clinical trials in this population.

In their study, published in the June 2014 issue of the Journal of the American Academy of Child and Adolescent Psychiatry, the researchers looked at whether an Internet-based trial was a feasible way to evaluate whether omega-3 fatty acids helped reduce hyperactivity in children with autism. The authors found that not only was it a valuable platform for conducting the randomized clinical trial, but that it was both cost and time effective, as well.

"Recruitment for clinical trials in children with autism is one of the biggest challenges we face in studying potential treatments, and we found that process to be accelerated and streamlined by using existing online communities for enrollment," said lead author Stephen Bent, associate professor of medicine at UCSF. "This trial can serve as a model for how to efficiently test potential treatments through the growing power of online communities."

Using the Interactive Autism Network's (IAN) robust online community of parents, the researchers enrolled 57 children from 28 states into the randomized trial.

The enrolled children were randomly assigned to either receive 1.3 grams of omega-3 fatty acids or an identical placebo daily for six weeks. Once a week the participants' parents received an email asking them to complete outcome measures on how their child was doing and report on the child's level of hyperactivity. The children's teachers reported on changes in hyperactivity as well. The parent and teacher responses were submitted to a database, allowing the researchers to access the data immediately.

Because the IAN requires that parents complete a short questionnaire and verify that their child has been professionally diagnosed in order to participate in the online network, the researchers were able to confirm the participants met the diagnostic criteria for autism without a clinic visit.

While the researchers found that the omega-3 fatty acids did not lead to a statistically significant reduction in hyperactivity, they concluded the online trial was a promising technique for evaluating treatments for autism.

"The entire study was completed in slightly more than three months from the start of enrollment, and demonstrates there are many advantages including low cost, rapid enrollment, high completion rate, convenience for participating families, and the ability to participate from virtually any location," said Bent. "We had 100 percent completion of all outcome measures from parents and teachers, indicating that there is an ease to this method of testing that engages parents at a higher rate than traditional trials."

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Information on Infant Sleep Often Is Inaccurate On Internet Searches

An interesting study looks at the reliability of health information found on the internet.

In 2010, 59% of the U.S. population used internet searches for health information, and parents searching for information regarding their children were among the top users. In 2011, the American Academy of Pediatrics (AAP) published recommendations for infant sleep safety to reduce the risk of sudden infant death syndrome (SIDS), suffocation, strangulation, and other accidental sleep-related deaths. However, according to a study scheduled for publication in The Journal of Pediatrics, Google internet searches related to infant sleep safety often do not reflect AAP recommendations.

Seventy-two percent of adults thought that they could believe most or all of the health information on the internet, and 70% of adults said that information that they found on the internet impacted their health or their actions pertaining to their health or the health of their children. According to Rachel Y. Moon, MD, pediatrician and SIDS researcher at Children’s National Medical Center, Washington, DC, “It is important for health care providers to realize the extent to which parents may turn to the internet for information about infant sleep safety and then act on that advice, regardless of the reliability of the source.”

Dr. Moon and colleagues from the University of South Carolina School of Medicine, Children’s National Medical Center, and George Washington University School of Medicine and Health Sciences checked the accuracy of information on infant sleep safety available on the internet, using Google, the top search engine in the U.S. Thirteen key phrases were created to reflect specific AAP recommendations for infant sleep safety, and the first 100 search engine websites were analyzed for each phrase (1300 websites total).

Of 1300 website results, 43.5% provided accurate information, 28.1% provided inaccurate information, and 28.4% provided information that was not relevant to infant sleep safety. When the websites that were not relevant were excluded, 60.8% of the websites provided accurate information. The key search phrases with the highest percentage of accurate information were “infant cigarette smoking,” “infant sleep position,” and “infant sleep surface”; those with the highest percentage of inaccurate information were “pacifier infant,” “infant home monitor,” and “infant co-sleeping.”

The most common types of websites resulting from the key search phrases were company/interest groups, retail product reviews, and educational websites. Government and organizational websites had the highest percentage of accurate information (80.1% and 72.5%, respectively). Blogs, retail product reviews, and individuals’ websites had the highest percentage of inaccurate information regarding infant sleep safety (30.9%, 36.2%, and 45.5%, respectively). News websites were accurate only one-half of the time.

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