BACKGROUND Participant recruitment for clinical research studies remains a significant challenge for researchers. Novel approaches to recruitment are necessary to ensure that populations are easier to reach. In the context of rare diseases, social media provides a unique opportunity for connecting with patient groups that have representatively lower diagnosis rates when compared with more common diseases or illness. We describe the implementation of designing a patient-centered approach to message design for the purposes of recruiting patients for clinical research studies for rare disease populations. METHODS Using an iterative research approach, we analyzed our previous experience of using web-based direct-to-patient recruitment methods to compare these online strategies with traditional center of excellence recruitment strategies. After choosing six research studies for inclusion in the previous study, in-depth, online interviews (n = 37) were conducted with patients represented in each disease category to develop and test recruitment message strategies for social media and a Web-based platform for patients to access study information and pre-screen. Finally, relationships were established with Patient Advocacy Groups representing each rare disease category to ensure further dissemination of recruitment materials via their own social media networks. RESULTS Guided by social marketing theory, we created and tested various recruitment message designs. Three key message concepts preferred by patients emerged: (1) infographic; (2) positive emotional messages; and (3) educational information for sharing. A base study website was designed and created based on data from patient interviews. This website includes the option for potential participants to pre-screen and determine their eligibility for the study. CONCLUSIONS Study participants report wanting to be involved in the design and implementation of recruitment approaches for clinical research studies. The application of the aforementioned methods could aide in the evolution of clinical research practices for the recruitment of both rare and common diseases, where patient-centric approaches can help to create targeted messages designs that participants pre-test and support.

中文翻译：

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一种在社区环境中进行临床试验的新颖方法：利用患者驱动的平台和社交媒体来推动基于网络的患者招募。

背景技术临床研究的参与者招募对于研究者仍然是重大挑战。必须采用新颖的招募方法，以确保更容易接触到人口。在罕见疾病的背景下，社交媒体提供了一个独特的机会，可以与那些较常见疾病相比具有较低诊断率的患者群体建立联系。我们描述了设计一种以患者为中心的消息设计方法的实施方式，目的是招募患者进行罕见病人群的临床研究。方法我们使用迭代研究方法，分析了我们以前使用基于网络的直接面向患者招募方法将这些在线策略与传统的卓越中心招募策略进行比较的经验。在选择六项研究纳入之前的研究后，对每种疾病类别的患者进行了深入的在线访谈（n = 37），以开发和测试社交媒体和基于网络的患者招聘信息策略访问研究信息和预筛查。最后，与代表每种罕见病类别的患者权益团体建立了关系，以确保通过他们自己的社交媒体网络进一步传播招聘材料。结果在社会营销理论的指导下，我们创建并测试了各种招聘信息设计。出现了患者偏爱的三个关键信息概念：（1）信息图；（2）积极的情感信息；（三）共享教育信息。根据患者访谈的数据设计和创建了基础研究网站。该网站为潜在参与者提供了预筛查并确定其参加研究资格的选项。结论研究参与者报告希望参与临床研究研究的招募方法的设计和实施。前述方法的应用可能有助于临床研究实践的发展，以招募稀有和常见疾病，其中以患者为中心的方法可以帮助创建针对性的消息设计，参与者可以进行预测试和支持。结论研究参与者报告希望参与临床研究研究的招募方法的设计和实施。前述方法的应用可以帮助临床研究实践的发展，以招募稀有和常见疾病，其中以患者为中心的方法可以帮助创建针对性的消息设计，参与者可以进行预测试和支持。结论研究参与者报告希望参与临床研究研究的招募方法的设计和实施。前述方法的应用可以帮助临床研究实践的发展，以招募稀有和常见疾病，其中以患者为中心的方法可以帮助创建针对性的消息设计，参与者可以进行预测试和支持。