Leveraging Social Networking Sites for an Autoimmune Hepatitis Genetic Repository: Pilot Study to Evaluate Feasibility.
Leveraging Social Networking Sites for an Autoimmune Hepatitis Genetic Repository: Pilot Study to Evaluate Feasibility.
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DOI：
10.2196/jmir.7683
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发表时间：
2018-01-18
影响因子：
7.4
通讯作者：
Lammert CS
中科院分区：
文献类型：
--
作者：
Comerford M;Fogel R;Bailey JR;Chilukuri P;Chalasani N;Lammert CS
传统的参与者招募方法在罕见病研究中往往是不够的。Facebook等社交网站可以提供一种工具，以规避常见的研究限制和陷阱。我们报告了我们的初步经验，基于Facebook的方法参与者招募和参与正在进行的自身免疫性肝炎（AIH）的研究。我们研究的目标是进行一项试点研究，以评估基于Facebook的方法是否能够招募地理分布广泛的参与者参与AIH患者导向的研究并获得高质量的表型数据。我们在2014年建立了一个Facebook社区，即自身免疫性肝炎研究网络（AHRN），以提供当前文献和AIH研究机会的安全和信誉良好的蒸馏。我们正在进行的观察性AIH研究的季度广告在AHRN上发布超过2年。感兴趣的和自我报告的AIH参与者随后在我们的研究协调员审查研究材料并完成知情同意书后入组。参与者通过邮件将完成的研究材料，包括流行病学调查问卷和遗传物质，返回到我们的设施。由研究医生获取并审查外部病历。我们成功地从20个不同州的29名自我报告AIH的参与者中获得了所有研究材料。90%（26/29）的参与者获得了肝活检结果，其中81%（21/29）的结果与AIH一致，15%（4/29）提示AIH伴原发性胆管炎（PBC），4%（1/29）仅患有PBC。共有83%（24/29）的患者至少有3个建议标准中的2个：自身免疫标志物阳性，肝活检组织学结果一致的AIH，并报告了免疫抑制剂治疗。4例患者的自我报告和医生记录在免疫抑制剂药物或AIH/PBC诊断方面存在差异。Facebook可以成为促进罕见疾病患者研究的有效辅助工具。基于社交媒体的方法超越了罕见疾病研究的既定限制，可以进一步发展研究社区。
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.
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