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Washington University NF Center Researchers Examine Methods to Engage Individuals with NF1 Worldwide for Research

NPRI- NF 1 Patient Registry Initiative- Washington University Neurofibromatosis Center/ St. Louis Children's Hospital- NF1The Internet provides new opportunities to recruit people with rare medical conditions to online patient registries for research. However, there is little known about the success of the different recruitment methods. Researchers in the Washington University NF Center have described recruitment strategies for the online NF1 Patient Registry Initiative (NPRI). This recent article was published in the American Journal of Medical Genetics.
The research, led by Kimberly J. Johnson, MPH PhD, employed four main ways to alert potential participants to the registry: (1) Facebook and Google advertising, (2) government and academic websites, (3) patient advocacy groups, and (4) healthcare providers. Participants reported how they first heard about the registry through an online questionnaire. During the 1-year period, 880 individuals participated in the registry from all 50 U.S. States, the District of Columbia, Puerto Rico, and 39 countries worldwide. Facebook and Google were reported as referral sources by the highest number of participants, followed by healthcare providers, and government and academic websites.
The researchers concluded, that internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. These findings have implications for other conditions, similar to NF1, and offer alternative strategies to recruit large numbers of individuals with rare medical conditions from across the world for clinical research studies.