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互联网上的临床试验资源必须旨在覆盖代表性不足的少数群体。

Clinical trial resources on the internet must be designed to reach underrepresented minorities.

作者信息

Wilson John J, Mick Rosemarie, Wei S Jack, Rustgi Anil K, Markowitz Sanford D, Hampshire Maggie, Metz James M

机构信息

Fox Chase Virtua Health Cancer Treatment Center, Voorhies, New Jersey 08043, USA.

出版信息

Cancer J. 2006 Nov-Dec;12(6):475-81. doi: 10.1097/00130404-200611000-00007.

Abstract

PURPOSE

Internet-based clinical trial information services are being developed to increase recruitment to studies. However, there are limited data that evaluate their ability to reach elderly and underrepresented minority populations. This study was designed to evaluate the ability of an established clinical trials registry to reach these populations based on expected Internet use.

PATIENTS AND METHODS

This study compares general Internet users to participants who enrolled in an Internet based colorectal cancer clinical trials registry established by OncoLink (www.oncolink.org) and the National Colorectal Cancer Research Alliance. Observed rates of demographic groupings were compared to those established for general Internet users.

RESULTS

Two thousand, four hundred and thirty-seven participants from the continental United States used the Internet to register for the database. New England, the Mid-Atlantic region, and the Southeast had the highest relative frequency of participation in the database, whereas the Upper Midwest, California, and the South had the lowest rates. Compared to general Internet users, there was an overrepresentation of women (73% vs. 50%) and participants over 55 years old (27% vs. 14%). However, there was an underrepresentation of minorities (10.3% vs. 22%), particularly African Americans (3.1% vs. 8%) and Hispanics (2.8% vs. 9%).

DISCUSSION

The Internet is a growing medium for registry into clinical trials databases. However, even taking into account the selection bias of Internet accessibility, there are still widely disparate demographics between general Internet users and those registering for clinical trials, particularly the underrepresentation of minorities. Internet-based educational and recruitment services for clinical trials must be designed to reach these underrepresented minorities to avoid selection biases in future clinical trials.

摘要

目的

基于互联网的临床试验信息服务正在不断发展,以增加研究的招募人数。然而,评估其覆盖老年人群体和代表性不足的少数族裔群体能力的数据有限。本研究旨在根据预期的互联网使用情况,评估一个既定的临床试验登记处覆盖这些人群的能力。

患者与方法

本研究将普通互联网用户与通过OncoLink(www.oncolink.org)和国家结直肠癌研究联盟建立的基于互联网的结直肠癌临床试验登记处登记的参与者进行比较。将观察到的人口统计学分组率与普通互联网用户的分组率进行比较。

结果

来自美国大陆的2437名参与者通过互联网注册了该数据库。新英格兰、大西洋中部地区和东南部在数据库中的参与相对频率最高,而上中西部、加利福尼亚和南部的参与率最低。与普通互联网用户相比,女性(73%对50%)和55岁以上参与者(27%对14%)的占比过高。然而,少数族裔的占比过低(10.3%对22%),尤其是非裔美国人(3.1%对8%)和西班牙裔(2.8%对9%)。

讨论

互联网正日益成为临床试验数据库登记的一种媒介。然而,即使考虑到互联网可及性的选择偏差,普通互联网用户与临床试验登记用户之间的人口统计学差异仍然很大,尤其是少数族裔的占比过低。必须设计基于互联网的临床试验教育和招募服务,以覆盖这些代表性不足的少数族裔,从而避免未来临床试验中的选择偏差。

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