CaBIG
Encyclopedia
The cancer Biomedical Informatics Grid (caBIG) is an open source
, open access information network with the mission of enabling secure data exchange throughout the cancer community. The initiative was developed by the National Cancer Institute
(part of the National Institutes of Health
) and is maintained by the Center for Biomedical Informatics and Information Technology (CBIIT).
It goal was to connect US biomedical cancer researchers using technology known as grid computing
. The program, led by the Center for Bioinformatics and Information Technology (CBIIT), began with a 3-year pilot phase. The pilot phase concluded in March 2007, and 56 NCI-designated cancer centers started a trial.
In addition to caGrid
, the underlying infrastructure for data sharing among organizations, caBIG developed software tools, data sharing policies, and common standards and vocabularies to facilitate data sharing
. Many cancer researchers (2,000+ participants representing 700 organizations) are currently trialing caBIG.
Software tools targeted:
where the right patient is given the right drug, at the right time.
caBIG technology is powering novel adaptive clinical trial
s such as the I-SPY2 TRIAL (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.
s (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.
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 caBIG program 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.
Some private companies claimed benefits from caBIG technology.
In March 2011, an NCI working group assessment concluded that caBIG "...expanded far beyond those goals to implement an overly complex and ambitious software enterprise of NCI-branded tools, especially in the Clinical Trial Management System (CTMS) space. These have produced limited traction in the cancer community, compete against established commercial vendors, and create financially untenable long-term maintenance and support commitments for the NCL".
Open source
The term open source describes practices in production and development that promote access to the end product's source materials. Some consider open source a philosophy, others consider it a pragmatic methodology...
, open access information network with the mission of enabling secure data exchange throughout the cancer community. The initiative was developed by the National Cancer Institute
National Cancer Institute
The National Cancer Institute is part of the National Institutes of Health , which is one of 11 agencies that are part of the U.S. Department of Health and Human Services. The NCI coordinates the U.S...
(part of the National Institutes of Health
National Institutes of Health
The National Institutes of Health are an agency of the United States Department of Health and Human Services and are the primary agency of the United States government responsible for biomedical and health-related research. Its science and engineering counterpart is the National Science Foundation...
) and is maintained by the Center for Biomedical Informatics and Information Technology (CBIIT).
History
The National Cancer Institute (NCI) of the United States funded the cancer Biomedical Informatics Grid (caBIG) initiative in spring 2004, headed by Kenneth Buetow.It goal was to connect US biomedical cancer researchers using technology known as grid computing
Grid computing
Grid computing is a term referring to the combination of computer resources from multiple administrative domains to reach a common goal. The grid can be thought of as a distributed system with non-interactive workloads that involve a large number of files...
. The program, led by the Center for Bioinformatics and Information Technology (CBIIT), began with a 3-year pilot phase. The pilot phase concluded in March 2007, and 56 NCI-designated cancer centers started a trial.
In addition to caGrid
CaGrid
The cancer Biomedical Informatics Grid, or caBIG is an initiative of the National Cancer Institute, part of the National Institutes of Health. The caGrid computer network and software support caBIG....
, the underlying infrastructure for data sharing among organizations, caBIG developed software tools, data sharing policies, and common standards and vocabularies to facilitate data sharing
Data sharing
Data sharing is the practice of making data used for scholarly research available to other investigators. Replication has a long history in science...
. Many cancer researchers (2,000+ participants representing 700 organizations) are currently trialing caBIG.
Software tools targeted:
- Collection, analysis, and management of basic research data
- Clinical trials managementClinical trial managementA clinical trial is the application of the scientific method to human health. Since such trials require the use of human test subjects and can severely impact the well-being of the subjects, as well as treatments of other people and large amounts of capital for those performing the trial, the...
, from patient enrollment to adverse event reporting and analysis - Collection, annotation, sharing, and storage of medical imagingMedical imagingMedical imaging is the technique and process used to create images of the human body for clinical purposes or medical science...
data - Biospecimen management
Impact
caBIG sought to provide foundational technology that enables a new approach to biomedicine called a “learning healthcare system.” 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 MedicinePersonalized medicine
Personalized medicine is a medical model emphasizing in general the customization of healthcare, with all decisions and practices being tailored to individual patients in whatever ways possible...
where the right patient is given the right drug, at the right time.
caBIG technology is powering novel adaptive clinical trial
Clinical trial
Clinical trials are a set of procedures in medical research and drug development that are conducted to allow safety and efficacy data to be collected for health interventions...
s such as the I-SPY2 TRIAL (Investigation of Serial studies to Predict Your Therapeutic Response with Imaging and molecular AnaLysis 2), which are designed to use biomarkers
Biomarker (medicine)
In medicine, a biomarker is a term often used to refer to a protein measured in blood whose concentration reflects the severity or presence of some disease state...
to determine the appropriate therapy for women with advanced breast cancer
Breast cancer
Breast cancer is cancer originating from breast tissue, most commonly from the inner lining of milk ducts or the lobules that supply the ducts with milk. Cancers originating from ducts are known as ductal carcinomas; those originating from lobules are known as lobular carcinomas...
. 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.
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:- Electronic Health Records – NCI and the American Society of Clinical OncologyAmerican Society of Clinical OncologyThe American Society of Clinical Oncology is the world's leading professional organization representing physicians of all oncology subspecialties who care for people with cancer. Founded in 1964 by Drs...
(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 – 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.
- Nationwide Health Information Network (NHIN) – An initiative to share patient clinical data across geographically disparate sources and create electronically-linked national health information exchange (HIE).
Collaborations
- BIG Health Consortium (BIG Health) – 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 announced a collaboration with the Dr. Susan LoveSusan LoveDr. Susan Love is an American surgeon, a prominent advocate of preventative breast cancer research, and author.She is the president of the Dr. Susan Love Research Foundation, a non-profit organization that promotes and funds breast cancer intraductal research, and has a close involvement with the...
Research Foundation to build an online cohort of women willing to participate in clinical trials. Called the Army of Women, it had a goal of one million in its databse; by December 2009 the site was "launched", and about 30,000 women and men signed up by 2010. - The Cancer Genome AtlasThe Cancer Genome AtlasThe Cancer Genome Atlas is a project to catalogue genetic mutations responsible for cancer, using genome analysis techniques started in 2005...
(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, 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. - National Cancer Research InstituteNational Cancer Research InstituteThe National Cancer Research Institute is a partnership between the government, charity and industry in the United Kingdom that takes a strategic planning role in co-ordinating cancer research...
(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. - Duke University- Duke is leveraging several caBIG clinical trials tools in their collaboration with the Beijing Cancer Hospital of Peking University.
- Latin American Breast Cancer Study – 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.
Adopt vs. Adapt
Participating institutions may either “adopt” caBIG tools to share data directly through caGrid, or “adapt” commercial or in-house developed software to be caBIG-compatible. The caBIG program developed software development kitSoftware development kit
A software development kit is typically a set of software development tools that allows for the creation of applications for a certain software package, software framework, hardware platform, computer system, video game console, operating system, or similar platform.It may be something as simple...
s (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 – 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 – 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) – 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 that provide domain-specific expertise to assist users about caBIG tools and their applications, and Support Service Providers, which are third party organizations that provide assistance to end-users and organizations adopting caBIG technology on a contract-for-services basis.
Open source
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.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 caBIG program 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.
Some private companies claimed benefits from caBIG technology.
Criticism
By 2011, the project had spent an estimated $350 million. Although the goal was considered laudible, much of the software was unevenly adopted after being developed at great expense to compete with commercial offerings.In March 2011, an NCI working group assessment concluded that caBIG "...expanded far beyond those goals to implement an overly complex and ambitious software enterprise of NCI-branded tools, especially in the Clinical Trial Management System (CTMS) space. These have produced limited traction in the cancer community, compete against established commercial vendors, and create financially untenable long-term maintenance and support commitments for the NCL".
Further reading
- Abernethy AP, Coeytauz R, Rowe K, Wheeler JL, Lyerly HK. Electronic patient-reported data capture as the foundation of a learning health care system. JCO. 2009;27:6522.
- Buetow KH. caBIG: proof of concept for personalized cancer care. JCO. 2009:27 Suppl 15S:e20712.
- Novik Y, Escalon L, Rolnitzky L. Academic cancer researchers' perspective on a federally mandated centralized comprehensive database of all cancer clinical trial results. JCO. 2009;27:e17576.
- “Health IT gets personal,” InformationWeek (11/13/09)
- “Health data in the raw,” Government Health IT (11/6/09)
- “NCI to open research grid to cancer patient 'army',” Government Health IT (10/9/09)
- “GridBriefing: The future of Healthcare - eHealth and Grid Computing,” GridTalk (9/09)
- “Collaboration and Sustainability are Front and Center as caBIG Celebrates Fifth Anniversary,” GenomeWeb/BioInform (7/09)
- “Sharing the Wealth of Data,” Scientific American (5/09)
- “Translational Research Drives Demand for 'Virtual' Biobanks Built on caBIG Tools,” GenomeWeb/BioInfom (4/3/09)
- “Connecting the Cancer Community caBIG Time,” Bio-IT World (7/14/08)
- “Heading for the BIG Time,” The Scientist (4/08)
- Cancer research goes open Bit-Tech (6/23/08)