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Abstract Background. Neurofibromatosis Type 1 (NF1) is a hereditary cancer syndrome caused by a germline NF1 gene mutation. Affecting an estimated 70,000-100,000 Americans, cancer in individuals with NF1 is a leading cause of death. However, the factors that modify cancer risk in NF1 are largely unknown. To facilitate NF1 research aimed at defining epidemiologic and clinical cancer risk factors, we created an online patient registry (https://nf1registry.wustl.edu/). In the current study, we sought to evaluate different recruiting mechanisms and the characteristics of participants recruited by each mechanism. Methods. Potential participants were alerted to the registry through three main mechanisms: (1) paid online advertising (Facebook and Google ads), (2) posting on government, academic, and advocacy group websites, and (3) healthcare provider-based recruiting through established NF1 Clinical Programs. Referral patterns were tracked through the online questionnaire that included a question about where the participant first heard about the registry. We compared the total number and characteristics of participants recruited through each method for the period of 4/17/2011-10/22/2012. Statistical significance of differences in participant characteristics between recruiting mechanisms were evaluated using ANOVA and chi-square tests. Results. A total of 693 participants with self-reported NF1 participated in the registry during the study period. The most effective recruitment mechanism was paid online advertising that resulted in over half of the recruits (n=378), of which 75% responded to a Facebook ad. The second most effective method was postings on government, academic, and advocacy group websites (69 participants) followed by healthcare provider referrals (53 participants). The remainder of the participants reported hearing about the registry through a variety of other mechanisms. The mean age of participants was 30.7 years with the majority of participants reporting white race (72%) and female sex (62%). Age and sex were not significantly associated with the specific recruitment mechanism. However, there was a significant difference in referral patterns by race, with a higher percentage of Whites recruited by Facebook ads than other races and a higher percentage of other races reporting referral via a Google ad than Whites. Conclusions. We found that the internet, especially Facebook advertising, provides a highly effective means for rapidly assembling large numbers of patients with a rare disease to an online registry for clinical research studies. Although participants were similarly recruited by all three recruitment mechanisms with respect to age and sex, referral patterns appear to differ by race. Supported by: An American Cancer Society Institutional Research Grant, Alex's Lemonade Stand Foundation, and the St. Louis Children's Hospital Foundation Citation Format: Kimberly J. Johnson, Nancy L. Mueller, David H. Gutmann. Efficacy of different recruitment methods for a neurofibromatosis type 1 online registry. abstract. In: Proceedings of the 104th Annual Meeting of the American Association for Cancer Research; 2013 Apr 6-10; Washington, DC. Philadelphia (PA): AACR; Cancer Res 2013;73(8 Suppl):Abstract nr 4847. doi:10.1158/1538-7445.AM2013-4847
Johnson et al. (Mon,) studied this question.