In Brief
2002 Budget Request
Scientific Priorities for Cancer Research
Infrastructure Needed for Cancer Research
Planning Disease-Specific Research
How We Work
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Cancer Information for Patients and Health Professionals
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Infrastructure Needed for Cancer Research: NCI's Challenge
Building Systems to Collect and Share Information — Informatics and Information Flow
Goal
Challenge
Progress Toward Meeting the Challenge
2002 Plan and Budget Request
Links to Related Information
Goal
Create an informatics infrastructure that enhances information and resource exchange
among researchers, clinicians, and the public.
Challenge
Around the globe, patients and cancer researchers alike are benefiting from the explosive growth of the World Wide Web and advances
in computing. But vast amounts of existing knowledge go unused because material from diverse sources cannot be accessed and
organized effectively. Therefore, we have asked ourselves, "How can we best collect, manage, and share this information?"
Components of the Challenge:
NCI's Cancer Informatics Infrastructure
A First Step: Accelerating the Clinical Trials Process
Supporting Research Through Informatics Integration
NCI's Cancer Informatics Infrastructure
To answer this question, NCI is designing a standards-based knowledge management framework — a cancer informatics
infrastructure — and a set of tools that will enable us to capture, analyze, apply, and reuse knowledge.
This new framework will:
- Create interfaces among cancer research communities (basic, translational, clinical, and population-based), and with
consumers and individuals who deliver cancer care and/or require information.
- Unify the research and cancer care practice communities by:
- Enabling easy access to cancer knowledge.
- Drastically reducing the time and effort needed to generate and use information.
- Facilitating the rapid translation of research observations into clinical and public health interventions.
A First Step: Accelerating the Clinical Trials Process
As a first step, we are using the cancer informatics infrastructure to increase the speed with which we carry out clinical trials.
- We have revised our criteria and standards for reporting data collected during a clinical trial and are developing common forms,
terminology, and reporting requirements across all types of clinical trials. This uniformity will increase the speed, efficiency, and
accuracy of results reporting.
- Special databases of medical and scientific terminology will help researchers, clinicians, and other users of NCI information
systems find and understand the information they seek.
NCI's leadership in this area will enable us to establish a national clinical trials effort that takes full advantage of the information
revolution to:
- Increase patient accrual.
- Establish common reporting practices.
- Optimize our ability to share knowledge with the medical and research communities and the public.
For more information, visit cancertrials.nci.nih.gov. Select "New Trials System."
Supporting Research Through Informatics Integration
The new cancer informatics infrastructure is complemented by an NCI program that aims to integrate the informatics elements of the
research programs outlined in our Extraordinary Opportunity areas.
- An extension of the informatics efforts developed to support the Cancer Genome Anatomy Project,
this program will provide an essential mechanism to bridge the traditional barriers that block communication of research
information among differing scientific disciplines.
- New integration and tools developed through these efforts will also support the initiatives of the Extraordinary Opportunity for
Cancer Communications.
The NCI informatics infrastructure will help us to:
- Address the issue of computer system compatibility.
- Manage the burgeoning body of information about fundamental discoveries.
- Alleviate the current bottleneck that exists between discovery and its application.
- Speed discovery.
- Lower costs.
- Capture data electronically in a way that makes information accessible to all participants in the cancer community.
Progress Toward Meeting the Challenge
Several of NCI's current initiatives support progress in informatics and information flow.
Example areas of progress:
Clinical Trials Informatics System
Enhancing Electronic Cancer Information Services
Common Scientific Outline
NCI Research Resources
Web Access to Cancer Genome Anatomy Project Data
Web-Based Tools for Information Dissemination
Clinical Trials Informatics System
NCI is creating the Clinical Trials Informatics System to reduce the paperwork burden of researchers participating
in clinical trials and help researchers more efficiently develop protocols and test advances in clinical oncology.
This innovative system links all phases of the clinical trial life cycle, from protocol development, distribution of information to assist
patient recruitment, screening, and protocol implementation to publication of clinical trials results.
Several components of the system were launched in Fiscal Year 2000, including:
- A document management tool designed to streamline clinical trials' data collection relevant to NCI's
scientific, regulatory, administrative, and communication needs. This tool will automate protocol development allowing investigators and
NCI staff to concentrate on scientific issues rather than on administrative details. It also will provide administrative information for
updating and maintaining NCI's clinical trials on the CancerNet Web site.
- A real-time drug inventory developed to reduce drug waste and automate the procurement and distribution of agents used in
clinical trials.
- A primary clinical data reporting mechanism for NCI-sponsored trials that will simplify, standardize, and streamline clinical data
reporting to NCI to facilitate drug development and clinical research.
- A system using common data elements, the clinical trial enterprise models, and the CancerNet/PDQ clinical trials registry
already in use at NCI to offer oncologists a large portfolio of clinical trials and easy-to-use Web-based patient and enrollment data forms.
- A Web-based clinical trials prototype for electronic submission of clinical trials information to CancerNet/PDQ.
In Fiscal Year 2000, we created common data elements for breast, lung, and colon cancer treatment trials to help simplify and
standardize data collection.
In 2001, we will expand our efforts to include treatment trials focused on five additional disease sites as well as prevention, early
detection, and screening trials. Through collaboration among all NCI programs involved in informatics activities, we are able to take full
advantage of newly developed systems to enhance existing ones.
Enhancing Electronic Cancer Information Services
NCI has made substantial progress in creating a new XML/SGML-based information infrastructure to support its comprehensive
cancer information products and services, including PDQ and CancerNet. XML-SGML is a non-proprietary standard for storing and
managing information. NCI's use of this standard will permit information to be used in a greater variety of information and retrieval
environments.
A recently developed search and retrieval engine has made possible the much-improved functionality of the redesigned CancerNet Web
site.
In addition, work is underway to create a powerful new data repository that will permit construction, integration, and maintenance of
comprehensive cancer-related information. This new system will support a broad range of content received from a variety of sources,
including multimedia assets.
Common Scientific Outline
NCI has developed the Common Scientific Outline (CSO), a tool with which we can categorize our research in both
a broadly scientific and disease-related manner.
By providing the means to analyze a national/international research portfolio, the CSO can have a profound effect on shaping
cancer-related research planning. Using this instrument, NCI and its fellow cancer research funding agencies will have an enhanced
foundation for informed discussions and planning.
NCI Research Resources
NCI's award-winning Web-based directory, NCI Research Resources directs researchers to resources that are generally
accessible without extensive negotiation or intellectual property issues and includes descriptions of each resource as well as
contact information.
Visit cancer.gov/resources.
Web Access to Cancer Genome Anatomy Project Data
Using the rich and diverse collection of data generated through the various components of the Cancer Genome Anatomy Project, NCI has:
- Created an integrated model of cancer-related genomic data.
- Developed a Web portal that permits researchers to explore CGAP data for information such as gene expression patterns in
different tissue types or gene variants in the population.
Visit cgap.nci.nih.gov.
Web-Based Tools for Information Dissemination
NCI has developed and implemented a modular computer program that assists in the rapid development, deployment, integration, and
maintenance of NCI initiative-specific Web sites. This program has been used to deploy the prototype Web sites for the Cancer Genome Anatomy Project (CGAP)
portal, the Mouse Models of Human Cancer Consortium and the Director's Challenge.
In support of the CGAP Web portal, NCI also has developed a prototype for an open source-based informatics architecture that
facilitates the retrieval and integration of data distributed among multiple, independent data sources. The open source-based code
allows users to modify it at a fundamental level.
2002 Plan and Budget Request
Goal
Create a cancer informatics infrastructure that that enables cancer research by enhancing information and resource exchange among
researchers, clinicians, and the public and reduces the barriers experienced by individuals seeking information about cancer prevention,
diagnosis, and treatment.
Objectives, Milestones, and Budget Request
| Objective 1 |
2002 Budget Request |
| Expand NCI's informatics infrastructure to enable integration and interface within and among basic, clinical,
translational, and population research initiatives. |
$35.3M |
| 2002 Milestones |
| Establish a Center for Bioinformatics that supports the integration of data and tools generated through the NCI's
Extraordinary Opportunities and facilitates information exchange within and between NCI-supported research initiatives. ($20.00M) |
| Establish a toolbox of open source informatics applications and services based on a common set of operating principles and standards that support diverse cancer research activities. ($5.00M) |
| Develop research tools that exploit and institutionalize the use of common data elements and a common vocabulary to further the exchange of all types of cancer information and data among the cancer community. ($10.00M) |
| Create a standing review panel for NCI information standards that formalizes NCI's role in the national standards development process and incorporates these standards into the development of informatics research tools. ($0.25M) |
| Objective 2 |
2002 Budget Request |
| Make information on cancer research, diagnosis, treatment, screening, and prevention more readily accessible to the entire cancer community, including physicians, patients, survivors, family members, and persons at risk. |
$21.0M |
| 2002 Milestones |
| Equip the NCI's cancer information system with powerful facilities for creating, integrating, and accessing a wide range of cancer information resources, including richly formatted and modular text documents and multimedia assets such as images, sound, and video. This technical infrastructure is essential to improve access to relevant and easily understandable cancer information. ($3.00M) |
| Restructure and index current NCI information products, including approximately 300 cancer information summaries and 1,800 ongoing clinical trials descriptions in CancerNet/PDQ.
Take full advantage of the NCI's restructured cancer information system to enable all types of users to easily identify and interpret information relevant to their concerns and move seamlessly between different layers of information to find the level most appropriate to their needs. Once complete, users will be able to identify clinical trials based on specific eligibility criteria. ($7.50M) |
| Develop Web-based search tools and user interfaces to extend the NCI's comprehensive electronic cancer information system, making research results and clinical trials information more easily accessible to the public. Extensive cancer vocabulary support will enable creation of both simple and expert search options, including interactive interfaces that guide users to information specific to their needs. ($5.00M) |
| Continue evaluating the feasibility of using concept-based searching and natural language processing. Perform pilot tests on existing NCI cancer information systems such as CancerNet/PDQ to ensure that, as the technology advances, NCI is positioned to take advantage of the value these techniques offer. ($1.50M) |
| Develop an outreach plan that encourages voluntary electronic submission to CancerNet/PDQ of information about non-NCI sponsored clinical trials, such as trials conducted by pharmaceutical companies and European clinical trials organizations. ($1.00M) |
| Modify the processes for writing and reviewing all clinical trials so that development and review can be completed in less than three months. ($3.00M) |
| Objective 3 |
2002 Budget Request |
| Make informatics tools easily accessible and use them to integrate and disseminate information from different cancer research communities. |
$18.0M |
| 2002 Milestones |
| Expand the capacity to maintain and distribute an inventory of tools and technologies developed by NCI. ($0.50M) |
| Develop an easily accessible and comprehensive electronic clinical trials system to provide uniform and easy access, enhance clinical trials recruitment, and promote scientific knowledge exchange among all participants. ($8.00M) |
| Further develop information portals such as the Cancer Genome Anatomy Project Web site as broad information access points that provide scientific and clinical information to the research community. ($5.00M) |
| Expand systems and tools that facilitate the grant/contract review and award process and simplify management of NCI's cancer research portfolio. ($3.00M) |
| Develop and provide methods for non-NCI Web sites and information services to directly search and retrieve information from the NCI's comprehensive cancer information system. ($1.50M) |
Links to Related Information
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