Comerford Megan, Fogel Rachel, Bailey James Robert, Chilukuri Prianka, Chalasani Naga, Lammert Craig Steven
Division of Digestive and Liver Diseases, Indiana University School of Medicine, Indianapolis, IN, United States.
Department of Medicine, Indiana University School of Medicine, Indianapolis, IN, United States.
J Med Internet Res. 2018 Jan 18;20(1):e14. doi: 10.2196/jmir.7683.
Conventional approaches to participant recruitment are often inadequate in rare disease investigation. Social networking sites such as Facebook may provide a vehicle to circumvent common research limitations and pitfalls. We report our preliminary experience with Facebook-based methodology for participant recruitment and participation into an ongoing study of autoimmune hepatitis (AIH).
The goal of our research was to conduct a pilot study to assess whether a Facebook-based methodology is capable of recruiting geographically widespread participants into AIH patient-oriented research and obtaining quality phenotypic data.
We established a Facebook community, the Autoimmune Hepatitis Research Network (AHRN), in 2014 to provide a secure and reputable distillation of current literature and AIH research opportunities. Quarterly advertisements for our ongoing observational AIH study were posted on the AHRN over 2 years. Interested and self-reported AIH participants were subsequently enrolled after review of study materials and completion of an informed consent by our study coordinator. Participants returned completed study materials, including epidemiologic questionnaires and genetic material, to our facility via mail. Outside medical records were obtained and reviewed by a study physician.
We successfully obtained all study materials from 29 participants with self-reported AIH within 2 years from 20 different states. Liver biopsy results were available for 90% (26/29) of participants, of which 81% (21/29) had findings consistent with AIH, 15% (4/29) were suggestive of AIH with features of primary biliary cholangitis (PBC), and 4% (1/29) had PBC alone. A total of 83% (24/29) had at least 2 of 3 proposed criteria: positive autoimmune markers, consistent histologic findings of AIH on liver biopsy, and reported treatment with immunosuppressant medications. Self-reported and physician records were discrepant for immunosuppressant medications or for AIH/PBC diagnoses in 4 patients.
Facebook can be an effective ancillary tool for facilitating patient-oriented research in rare diseases. A social media-based approach transcends established limitations in rare disease research and can further develop research communities.
在罕见病研究中，传统的参与者招募方法往往并不充分。诸如脸书这样的社交网站可能提供一种手段来规避常见的研究限制和陷阱。我们报告了我们基于脸书的方法在招募参与者并使其参与正在进行的自身免疫性肝炎（AIH）研究方面的初步经验。
我们研究的目标是进行一项试点研究，以评估基于脸书的方法是否能够将地域分布广泛的参与者招募到以AIH患者为导向的研究中，并获得高质量的表型数据。
我们在2014年建立了一个脸书社区，即自身免疫性肝炎研究网络（AHRN），以提供当前文献和AIH研究机会的安全且有信誉的提炼。在两年多的时间里，我们在AHRN上每季度发布我们正在进行的AIH观察性研究的广告。在研究协调员审查研究材料并完成知情同意后，对感兴趣且自我报告为AIH的参与者进行招募。参与者通过邮件将填写完整的研究材料，包括流行病学问卷和遗传物质，返还给我们的机构。研究医生获取并审查外部医疗记录。
在2014年至2016年的两年内，我们成功从20个不同州的29名自我报告为AIH的参与者那里获得了所有研究材料。90%（26/29）的参与者有肝活检结果，其中81%（21/29）的结果与AIH一致，15%（4/29）提示AIH伴有原发性胆汁性胆管炎（PBC）特征，4%（1/29）仅有PBC。共有83%（24/29）的参与者符合三项提议标准中的至少两项：自身免疫标志物阳性、肝活检中AIH的组织学结果一致以及报告使用免疫抑制药物治疗。在4名患者中，自我报告和医生记录在免疫抑制药物或AIH/PBC诊断方面存在差异。
脸书可以成为促进罕见病患者导向研究的有效辅助工具。基于社交媒体的方法超越了罕见病研究中既定的限制，并可以进一步发展研究群体。
