Mesothelioma Virtual Bank for Translational Research

描述(由申请人提供)：拟议的间皮瘤转译研究虚拟银行(MVB)将创建和维护基础设施，以支持国家虚拟患者登记和组织库。MVB建议通过一个合作工作组创建和维护一套资源，使他们独立存储的间皮瘤组织可供公众使用。MVB将使用一个基于互联网的集中式数据库或注册表，该注册表仿照宾夕法尼亚州癌症联盟生物信息学联盟(PCABC)创建的虚拟组织库注册表(见http://pcabc.upmc.edu).MVB登记处将用于记录和收集与每个组织样本(血清、组织或DNA)有关的数据。每个参与机构将负责将其样本的数据录入和更新到登记册中。该登记册将由匹兹堡大学团队与疾病预防控制中心和国立卫生研究院合作，并通过这项合作协议在其指导下建立和管理。MVB的营销和推广工作将通过与跨社区翻译研究(TRAC)合作完成。除了积极向研究界的潜在用户宣传这一资源的可用性外，TRAC还将利用其与患者倡导社区的深度联系，与这一根深蒂固的既得利益群体建立对话。这个社区的教育和直接参与将为MVB获得全面和财政支持，这将是维持组织库、信息学工具和患者登记工作人员所必需的，这些对这一重要计划的长期生存至关重要。

DESCRIPTION (provided by applicant): The proposed Mesothelioma Virtual Bank (MVB) for Translational Research will create and maintain infrastructure to support a national virtual patient registry and tissue bank. MVB proposes to create and maintain a set of resources through a cooperative working group that will make available their independent stores of mesothelioma tissue for public access. MVB will use a centralized internet-based database or registry modeled after the virtual tissue bank registry created by the Pennsylvania Cancer Alliance Bioinformatics Consortium (PCABC, see http://pcabc.upmc.edu). The MVB registry will be used for data recording and collection related to each tissue sample (serum, tissue or DMA). Each participating institution will be responsible for the data entry and updates into the registry for each of their samples. The registry will be established and managed by the University of Pittsburgh team in collaboration with, and guidance from the CDC and NIOSH via this cooperative agreement. Marketing and outreach efforts of the MVB will be accomplished by partnering with Translating Research Across Communities (TRAC). In addition to actively publicizing the availability of this resource to prospective users in the research community, TRAC will capitalize on its deep linkages to the Patient Advocacy Community to create a dialogue with this deeply vested population. Education and direct involvement of this Community will garner general as well as fiscal support for the MVB that will be necessary to sustain the tissue bank, informatics tools and patient registry staff critical to the long term viability of this important program.