Web-site-based recruitment for research studies on abdominal aortic and intracranial aneurysms
Web-site-based recruitment for research studies on abdominal aortic and intracranial aneurysms
复制标题
DOI：
10.1089/109065701753617435
复制
发表时间：
2001-12-01
期刊：
影响因子：
--
通讯作者：
Kuivaniemi, H
中科院分区：
文献类型：
--
作者：
Salkowski, A;Tromp, G;Kuivaniemi, H
我们目前对腹主动脉瘤和颅内动脉瘤的发病机制的认识是有限的，但遗传和环境因素以及它们的相互作用可能在动脉瘤的发展和破裂中起重要作用。为了确定导致这些疾病的遗传因素，我们正在进行全基因组筛查研究，这需要大量的患者和家庭成员。然而，目前寻找有资格进行遗传研究的患者的方法往往昂贵且无效。为了改善患者招募，开发了一个网站（cmmg.biosci.wayne.edu/ags）。该网站提供了关于我们研究的一般信息，邀请参与研究，并提供了相关医疗和教育网站的链接。在1999年7月至2000年12月期间，该网站收到了5，108次访问（每天13次访问）。每个月大约收到20份研究申请。共有49%（57/117）的个体对主动脉瘤有反应，63%（84/134）的个体对颅内动脉瘤研究有反应，报告家族中至少有两个受影响的血亲，因此有资格进行我们的遗传研究。总之，基于网络的患者招募是成功的，并提供了一个提高的成功率，因为事实上，响应者更积极地参与研究。
Our current understanding on the pathogenesis of abdominal aortic and intracranial aneurysms is limited, but genetic and environmental factors as well as their interactions are likely to play important roles in the development and rupture of aneurysms. To identify genetic factors contributing to these diseases, we are carrying out genome-wide screening studies, which require a large number of patients and family members. Current methods of finding patients who qualify, for genetic studies are, however, often costly and ineffective. To improve patient recruitment, a Web site was developed (cmmg.biosci.wayne.edu/ags).* The site gives general information about our study, solicits participation into the study, and provides links to relevant medical and educational sites. During the time period of July, 1999, to December, 2000, the site received 5, 108 visits (13 visits/day). Approximately 20 research study applications are received each month. A total of 49% (57/117) of the individuals responding to the aortic aneurysm and 63% (84/134) responding to the intracranial aneurysm study report at least two affected blood relatives in the family and, therefore, qualify for our genetic studies. In conclusion, Web-based patient recruitment,is successful and provides an improved success rate due to the fact that the responders are more motivated to participate in research studies.