The Twin Research Registry at SRI International

The Twin Research Registry at SRI International
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DOI:
10.1017/thg.2012.81
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发表时间:
2013-02-01
影响因子:
0.9
通讯作者:
Swan, Gary E.
Swan, Gary E.
中科院分区:
医学4区
文献类型:
--
作者:
Krasnow, Ruth E.;Jack, Lisa M.;Swan, Gary E.

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SRI国际的双胞胎研究登记处(TRR)是一个以社区为基础的双胞胎登记处,于1995年通过在当地媒体(主要是在广播电台和报纸上)发布广告而建立。截至2012年8月,登记的同性和异性双胞胎有3120人;86%的人年龄在18岁或以上(平均年龄44.9岁,SD 16.9岁),14%的人年龄在18岁以下(平均年龄8.9岁,SD 4.5);67%的人是女性,62%的人是自我报告的单一合子(MZ)。在过去的15年里,超过1375对双胞胎参与了与旧金山加州大学医学中心、德克萨斯大学MD安德森癌症中心和斯坦福大学医学院的合作研究。每一对双胞胎都在TRR网站上或在电话采访中在线填写一份包含基本人口统计信息的登记表。通过年度通讯和生日贺卡与会员保持联系。TRR的管理人员根据既定政策保护双胞胎数据的机密性;未经双胞胎事先许可,不得向其他研究人员提供任何信息;所有方法和程序都由机构审查委员会审查。到目前为止,研究的表型包括与尼古丁代谢、诱变剂敏感性、阿片类药物使用前后的疼痛反应以及对环境暴露的各种免疫反应有关的表型,包括二手烟和季节性流感病毒和水痘带状疱疹病毒的疫苗接种。TRR中的双胞胎参与了复杂的、临床相关的表型研究,而在大样本中测量这些表型是不可行的。
The Twin Research Registry (TRR) at SRI International is a community-based registry of twins established in 1995 by advertising in local media, mainly on radio stations and in newspapers. As of August 2012, there are 3,120 same-and opposite-sex twins enrolled; 86% are 18 years of age or older (mean age 44.9 years, SD 16.9 years) and 14% less than 18 years of age (mean age 8.9 years, SD 4.5); 67% are female, and 62% are self-reported monozygotic (MZ). More than 1,375 twins have participated in studies over the last 15 years in collaboration with the University of California Medical Center in San Francisco, the University of Texas MD Anderson Cancer Center, and the Stanford University School of Medicine. Each twin completes a registration form with basic demographic information either online at the TRR Web site or during a telephone interview. Contact is maintained with members by means of annual newsletters and birthday cards. The managers of the TRR protect the confidentiality of twin data with established policies; no information is given to other researchers without prior permission from the twins; and all methods and procedures are reviewed by an Institutional Review Board. Phenotypes studied thus far include those related to nicotine metabolism, mutagen sensitivity, pain response before and after administration of an opioid, and a variety of immunological responses to environmental exposures, including second-hand smoke and vaccination for seasonal influenza virus and Varicella zoster virus. Twins in the TRR have participated in studies of complex, clinically relevant phenotypes that would not be feasible to measure in larger samples.