Evaluation of participant recruitment methods to a rare disease online registry
Evaluation of participant recruitment methods to a rare disease online registry
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DOI：
10.1002/ajmg.a.36530
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发表时间：
2014-07-01
影响因子：
2
通讯作者：
Gutmann, David H.
中科院分区：
文献类型：
--
作者：
Johnson, Kimberly J.;Mueller, Nancy L.;Gutmann, David H.
互联网通信的进步提供了新的机会，将来自广泛地理区域的罕见疾病患者聚集到在线患者登记处进行研究。然而，关于不同征聘方法的效力的公开资料很少。在这里，我们描述了招募模式和自我鉴定的常染色体显性遗传病1型神经纤维瘤病（NF 1）的个人的特点，他们在2012年1月1日至2012年12月31日的1年期间参加了在线患者登记。我们采用了四种主要机制来提醒潜在参与者注意注册：（1）Facebook和Google广告，（2）政府和学术网站，（3）患者倡导团体，以及（4）医疗保健提供者。参与者通过在线问卷报告了他们第一次听说登记处的情况。在1年期间，来自美国所有50个州、哥伦比亚特区、波多黎各和39个国家的880名个人参加了登记。Facebook和谷歌被最多的参与者（n=550，72% Facebook）报告为推荐来源，其次是医疗保健提供者（n=74）以及政府和学术网站（n=71）。平均受试者年龄为29 +/- 18岁，大多数受试者报告为白色人种（73%）和女性（62%），不考虑报告的转诊来源。互联网广告，特别是通过Facebook，导致了大量NF 1患者的有效登记。我们的研究证明了这种方法的潜在效用，可以将来自世界各地的罕见疾病患者聚集在一起进行研究。(c)2014 Wiley Periodicals，Inc.
Internet communication advances provide new opportunities to assemble individuals with rare diseases to online patient registries from wide geographic areas for research. However, there is little published information on the efficacy of different recruitment methods. Here we describe recruitment patterns and the characteristics of individuals with the self-identified autosomal dominant genetic disorder neurofibromatosis type 1 (NF1) who participated in an online patient registry during the 1-year period from 1/1/2012 to 12/31/2012. We employed four main mechanisms 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. Facebook and Google were reported as referral sources by the highest number of participants (n=550, 72% Facebook), followed by healthcare providers (n=74), and government and academic websites (n=71). The mean participant age was 29 +/- 18 years and most participants reported White race (73%) and female sex (62%) irrespective of reported referral source. Internet advertising, especially through Facebook, resulted in efficient enrollment of large numbers of individuals with NF1. Our study demonstrates the potential utility of this approach to assemble individuals with a rare disease from across the world for research studies. (c) 2014 Wiley Periodicals, Inc.