Terry Sharon F, Horn Elizabeth J, Scott Joan, Terry Patrick F
Genetic Alliance, Washington, DC, USA.
Genetic Alliance Registry & BioBank, Washington, DC, USA.
Per Med. 2011 Mar;8(2):207-213. doi: 10.2217/pme.11.1.
The Genetic Alliance Registry and BioBank was founded in 2003 on the principal that a shared infrastructure would facilitate easy flow of resources and accelerate disease-specific research. Based on the Pseudoxanthoma Elasticum International Registry and BioBank, six disease advocacy organizations came together to identify the best solutions for advocacy organizations to promote and collect biological samples with associated clinical information from their members. This required a flexible system that could accommodate an extensive amount of data and samples, support new avenues of research, yet be adaptable to meet the needs of a variety of organizations, and straightforward to implement and use. After extensive landscape analyses, a cross-disease, infinitely expandable registry and biorepository was established. This article reports on this effort and shares the lessons learned.
遗传联盟注册库和生物样本库成立于2003年，其理念是共享基础设施将促进资源的顺畅流通并加速针对特定疾病的研究。基于弹性假黄瘤国际注册库和生物样本库，六个疾病倡导组织联合起来，为倡导组织确定最佳解决方案，以促进从其成员那里收集带有相关临床信息的生物样本。这需要一个灵活的系统，该系统能够容纳大量数据和样本，支持新的研究途径，同时能够适应各种组织的需求，并且易于实施和使用。经过广泛的前景分析，建立了一个跨疾病、可无限扩展的注册库和生物样本库。本文报告了这项工作并分享了经验教训。
