讨论:CaBIG

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正在翻译

如题。“Ph.eyes (留言) 2011年4月11日 (一) 08:14 (UTC)”[回复]

这个项目已经退役了。--Linforest（留言） 2014年7月31日 (四) 13:26 (UTC)[回复]

未翻译内容

未翻译内容如下：--Flame 欢迎泡茶 2011年7月12日 (二) 00:33 (UTC)[回复]

In addition to caGrid, the underlying infrastructure for data sharing among organizations, caBIG has developed numerous software tools, data sharing policies, and common standards and vocabularies to facilitate data sharing. The caBIG software tools are extensive, but range widely in terms maturity, usability, compliance to caBIG standards, and adoption among the NCI cancer centers. Many cancer researchers (2,000+ participants representing 700 organizations) are currently trialing caBIG with varying levels success. caBIG software tools capabilities are targeting:

Collection, analysis, and management of basic research data
Clinical trials management, from patient enrollment to adverse event reporting and analysis
Collection, annotation, sharing, and storage of medical imaging data
Biospecimen management

对生物医学研究和个性化医疗的影响

caBIG seeks to provide foundational technology that enables a new approach to biomedicine called a “learning healthcare system.”^[1] This model of research and care delivery relies on the rapid exchange of information between all sectors of research and care, so that researchers and clinicians are able to collaboratively review and accurately incorporate the latest findings into their work. The ultimate goal is to speed the biomedical research process, leading to improved patient outcomes and more efficient healthcare delivery. This new approach is often called Personalized Medicine where the right patient is given the right drug, at the right time. caBIG technology is powering novel adaptive clinical trials such as the I-SPY2 TRIAL^[2] (Investigation of Serial studies to Predict Your Therapeutic Response with Imaging and molecular AnaLysis 2), which are designed to use biomarkers to determine the appropriate therapy for women with advanced breast cancer. By collecting and analyzing clinical data in (nearly) real-time, patients' responses to therapy can be rapidly assessed to measure the effectiveness of a particular treatment, and clinical decisions may be refined to achieve optimal outcomes.

医疗信息技术的应用Connections to Health Information Technology

Health Information Technology (HIT) enables comprehensive management and secure exchange of medical information between researchers, health care providers, and consumers. When properly applied, HIT can improve the quality of health care; help prevent medical errors; and reduce redundancy, paperwork and administrative inefficiencies, ultimately leading to improved patient outcomes. caBIG supports national HIT initiatives including:

医用病历系统 – NCI and the American Society of Clinical Oncology (ASCO) have initiated a collaboration to create an oncology-specific EHR that utilizes caBIG standards for interoperability and that will enable oncologists to manage patient information in an electronic format that accurately captures the specific interventional issues unique to oncology.
Family Health History Tool^[3] – CBIIT hosts the Family Health History Tool, a web-based application developed by the U.S. Department of Health and Human Services (HHS) to allow users to easily track and share family health information with healthcare providers so that it may be used to inform decisions about prevention, diagnosis and treatment to improve individual patient outcomes.
美国全国卫生信息网络 (NHIN) – An initiative to share patient clinical data across geographically disparate sources and create electronically-linked national health information exchange (HIE).

主要参与机构

BIG健康协会 (BIG Health)^[4] – BIG Health was launched as a partnership of previously un-linked healthcare stakeholders who are now connected via caBIG. The Consortium supports personalized medicine by encouraging a collaborative approach to biomedical research and healthcare delivery.

Health of Women Study – In July 2009, caBIG entered into a research collaboration with the Dr. Susan Love Research Foundation^[5] to build the first ever online cohort of one million women to investigate the causes and prevention of breast cancer. The study will leverage caBIG technology to store the abundance of data. Potential participants sign up for this research study through the Love/Avon Army of Women.

癌症基因组图谱计划 (TCGA) – caBIG forms the information infrastructure of The Cancer Genome Atlas (TCGA), an integrated database of molecular and clinical data. TCGA is a large-scale collaborative effort supported by the National Cancer Institute (NCI) and the National Human Genome Research Institute (NHGRI) to accelerate our understanding of the genetics of cancer using innovative genome analysis technologies. TCGA aims to characterize more than 10,000 tumors across at least 20 cancers by 2015. caBIG provides connectivity, data standards, and tools to collect, organize, share, and analyze the diverse research data from multiple laboratories and among different institutions that populate this database. Through the TCGA Data Portal^[6], researchers and clinicians can easily perform complex queries, allowing unprecedented opportunities to discover and develop a new generation of targeted diagnostics, therapies, and preventive interventions for cancer.

英国国家癌症研究所 (NCRI) – Since 2007, NCI has been working with UK cancer research association, NCRI, to foster a partnership that will benefit global cancer research. The two organizations share a variety of technologies developed to enable collaborative research and the secure exchange of research data using caGrid and the NCRI Oncology Information Exchange (ONIX) portal.

杜克大学^[7]- Duke is leveraging several caBIG clinical trials tools in their collaboration with the Beijing Cancer Hospital of Peking University.

Latin American Breast Cancer Study^[8] – The countries that make up the United States-Latin America Cancer Research Network (US-LA CRN) will link their research efforts through caBIG, to allow data- and knowledge-sharing in a recently launched a breast cancer study.

项目实施情况

Adopt vs. Adapt

Participating institutions may either “adopt” pre-existing caBIG tools to share data directly through caGrid, or “adapt” commercial or in-house developed software to be caBIG-compatible. The caBIG program has developed Software Development Kits (SDKs) that support the creation of interoperable software tools and detailed instructions on the process of adapting existing tools or developing new applications to be caBIG-compatible.

Programs

Cancer Centers Program^[9] – Most of the 65 NCI-designated cancer centers use caBIG technology to report and retrieve data. caBIG was originally developed specifically to connect these centers as a way to enable collaborative research and eliminate data disconnects that slow down the development of personalized medicine.
NCI Community Cancer Centers Program^[10] – The NCCCP is a program to test the concept of a national network of community-based cancer centers. Many of the 16 centers in the program are implementing caBIG tools in support of their research and care programs.
Enterprise Support Network (ESN)^[11] – The ESN is a diverse collection of organizations that support the caBIG community by providing services, mentoring and expertise. The ESN program includes Knowledge Centers^[12] that provide domain-specific expertise to assist users about caBIG tools and their applications, and Support Service Providers^[13], which are third party organizations that provide assistance to end-users and organizations adopting caBIG technology on a contract-for-services basis.

对开源事业的促进作用

Since 2004, the caBIG program has established an important new model for open source communities – one that demonstrates a highly successful adaptation of earlier models to a public-private partnership. The caBIG program has produced new software for use in cancer research under contract to software development teams largely within the extramural research community. This has allowed the software to be produced by the teams who know best what the final products should do. Generally, these teams use in-house subject matter experts to define requirements, build functional software, and test the software as part of their own productions in their operations ensuring that it is a good fit across the potential user base. These teams also source the critical software engineering skills in exactly the same way that other government and commercial enterprises do – from the most readily available, best skilled, and most economical sources. The competitive proposal process ensures this engagement of resources and the best value to the American taxpayer for the project dollars expended. It is important to note that sometimes US based sources have not had the capacity or best economic value in these competitive bids. In general, US firms appear to be adapting well to the competitive pressure and are finding new ways to win.

The above description does apply to virtually any government contracted software development program. In general, the software assets that are produced are the property of the US government and the US taxpayers. Depending on the terms in specific contracts, they might be accessible only by request under the Freedom of Information Act (FOIA). The timeliness of response to such requests might preclude a requester from ever gaining any secondary value from software released under a FOIA request.

The innovative advancement within the caBIG program lies in the handling of the resulting software. The caBIG program has placed the all caBIG software in a software repository that is freely accessible to individuals and commercial enterprises for download. Just like any other open source development community, anyone can modify the downloaded software; however, the licensing applied to the downloaded software assets allows far greater flexibility than is typical. An individual or enterprise is allowed to contribute the modified code back to the caBIG program but is not required to do so. Likewise, the modifications can be made available as open source but are not required to be made available as open source. The caBIG licensing even allows the use of the caBIG applications and components, combined with additions and modifications, to be released as commercial products. These aspects of the caBIG program actually encourage commercialization of caBIG technology in a way that is generally atypical of open-source initiatives.

By making the software available in this way, commercial enterprises realize two of very important benefits to entrepreneurial initiatives – lowered risk and accelerated/lower cost development cycles. The first benefit results from the research community’s participation in the requirements definition and software development process. The second results from readily available software components that are already tested in production usage. There is good evidence, albeit early, that the program is encouraging and catalyzing the commercial software and service market. Click here for an example.

Unfortunately, some parts of the commercial software market have been slow to understand the business potential or to recognize the advantages inherent in this particular configuration of open source model. A vocal minority has even offered some criticisms. These concerns can be expected to diminish as commercial enterprises learn to make better use of the rich repository of software assets that can be freely applied within their products. Some example minority criticisms are included in the next section.

批评意见

限制竞争

Since 2004, caBIG has launched and highly promoted its controversial approach of using immature open source tools, which directly compete with many legitimate small and medium sized software businesses in the US and around the world. caBIG's anti-competitive practices have an unfair advantage of large financial contributions from the US federal government, providing free OSS software tools that directly compete with specialized software vendors, and in many cases pays cancer centers to try to adopt their OSS tools. This is in direct conflict with US Anti-trust law and has had a direct impact on slowing the market adoption and thus development of cancer research focused commercial software vendors, especially US based software companies that must compete on the global front.^{[来源请求]}

On the other hand, caBIG has created the designation Support Service Provider, which is a network of private companies, mostly small businesses, who are licensed to provide software and support to the caBIG community.

过度市场化

Although caBIG has had limited success with end users adopting its tools or delivering real value, caBIG messages strong success in adoption and value provisions, spending large amounts of its budget on marketing efforts, development of collateral, and paying for presentation spots at industry conferences.

开发工具用途不明确

Many of the caBIG OSS Tools are immature, often providing overlapping capabilities, and not easily integrating together for a coherent infrastructure at a cancer center. Developers recently working with the software on an important project at a major learning university in the United States characterized it as "an atrocity."^{[来源请求]}