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Member Research & Reports

Member Research & Reports

WashU: Facebook, Google Find Patients with Rare Diseases for Research

Internet advertising on Facebook and Google can be an effective way to recruit people with rare diseases for clinical research, according to a new study from the Brown School at Washington University in St. Louis.

Researchers analyzed referral sources for 880 participants in an online patient registry for people with a genetic disorder, neurofibromatosis type 1 (NF1), which affects an estimated 1/3,000 individuals. Those with the disorder have a higher risk of cancers, including adult and pediatric brain tumors.

Facebook and Google were reported as referral sources by nearly 70 percent of participants, followed by health care providers and government and academic websites. Researchers placed Internet ads for the registry based on users’ interests and the search terms they entered.

“Recruiting through Facebook and Google was highly effective for identifying individuals with NF1 for research studies,” said Dr. Kimberly J. Johnson, assistant professor at the Brown School and the lead researcher on the project. Assembling large populations of individuals with rare diseases for participation in research studies has historically been challenging. Increasing access to the Internet across the world provides a new opportunity to conduct larger studies in these populations than previously possible. She said the recruiting would be especially valuable for research aimed at predicting which children with NF1 will develop brain tumors.

The study was published in the American Journal of Medical Genetics.

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