At the heart of every ASCO program—every clinical practice guideline, every policy statement, every scientific meeting—is evidence. What do the data say? Evidence informs decision-making across the spectrum of cancer care, from the question a bench researcher will investigate to the treatment a physician will recommend to his or her patient.
Since its founding, ASCO has been committed to helping advance the field of oncology and improve cancer care through the application and utilization of high-quality evidence. Beginning in January 2017 with the formation of the ASCO Center for Research and Analytics (CENTRA), and even earlier with development of CancerLinQ DiscoveryTM, the ASCO Board of Directors has been laying the groundwork for making ASCO-gathered information more broadly available to the oncology community to analyze and create new evidence. In fall 2017, ASCO announced the launch of processes for researchers to access ASCO-generated information from CancerLinQ® and other ASCO programs.
Depending on the type of data you need, you can make a request through one of two divisions:
- CENTRA: for operational data from the Society’s various publications, surveys, quality programs, and research projects (some of these data sets go back as far as the early 1980s)
- CancerLinQ Discovery: for clinical data from ASCO’s rapid learning health system CancerLinQ.
CENTRA
CENTRA was created in 2017 to serve as a hub for ASCO’s research activities, to make an array of cancer-related data available to the oncology community, and to provide consultation and support for research and analysis. CENTRA maintains ASCO’s expansive repository of information, which qualified individuals and organizations may request for research purposes.
In addition to fulfilling data requests through CENTRA, ASCO is open to opportunities for collaboration with researchers in studies that fit ASCO’s mission, vision, and strategic goals. Such collaborations might include studies to help support cancer policy initiatives, advance the practice of oncology, and improve the quality and efficiency of cancer care. You can contact CENTRA staff at CENTRA@asco.org to discuss partnering with ASCO on a research project or with questions about CENTRA data requests. ASCO staff and volunteer leadership will help determine whether the particular research project aligns with ASCO’s current priorities.
Data Sources
“Every piece of information that flows through ASCO ultimately becomes a data element that might be informative for someone’s research interests,” said ASCO’s Senior Vice President and Chief Medical Officer Richard L. Schilsky, MD, FACP, FASCO, FSCT. “CENTRA supports ASCO’s mission to conquer cancer by generating, integrating, analyzing, and sharing oncology data to foster innovation and research.”
Richard L. Schilsky, MD, FACP, FASCO, FSCT
CENTRA makes data available to researchers from the following sources: ASCO Educational Book articles; abstracts, slides, presentations, and posters from ASCO’s scientific meetings; the Journal of Clinical Oncology (JCO); the Journal of Oncology Practice; the Journal of Global Oncology; JCO Clinical Cancer Informatics; Medical Oncology In-Training Exam; Oncology Practice Census; Quality Oncology Practice Initiative (QOPI®) and QOPI Certification Program; and Survey of Oncology Practice Operations.
As ASCO’s Targeted Agent and Profiling Utilization Registry (TAPUR™) study progresses, it is expected that researchers will be able to request TAPUR data through CENTRA later this year.
ASCO Data
Visit asco.org/research-progress and select “ASCO Data Repository” to learn more about ASCO’s available datasets, review the information-sharing policy, complete the research project proposal form, and submit your data request. This site will also direct you to the sister website where CancerLinQ Discovery data are available. Researchers are encouraged to be as comprehensive as possible on the proposal form and to provide appropriate background materials, in order to get the best possible guidance and assistance from CENTRA staff.
Once submitted, ASCO staff review the proposal to ensure that ASCO has the data requested and the request is consistent with ASCO’s information--sharing policy. The ASCO Information Sharing Committee will consider the proposal’s scientific merit, the qualifications of the research team, and the concordance of the project with ASCO’s mission, among other factors. The committee may request additional information about the proposal.
Upon approval of the request, ASCO staff will send a data use agreement and estimated fulfillment cost. ASCO’s assessed fees include consideration for ASCO members, students, and Conquer Cancer Foundation Young Investigator Award recipients. The requested information will be provided upon ASCO’s receipt of a signed data use agreement and payment.
All data requests must be made via the ASCO Data Repository application process and are subject to review by ASCO. ASCO will make reasonable efforts to evaluate all compliant requests.
ASCO retains sole discretion as to whether or not to fulfill requests. ASCO does not guarantee fulfillment of any specific requests.
CancerLinQ Discovery
CancerLinQ is a powerful platform containing growing amounts of real-world cancer information—to date, over 750,000 de-identified patient records from more than 100 oncology practices. This national initiative will allow cancer providers to improve the quality and value of care by analyzing a growing number of patient medical records, uncovering patterns and trends, and measuring their care against that of their peers and recommended guidelines.
Robert S. Miller, MD, FACP, FASCO
CancerLinQ Discovery allows researchers to translate big data from CancerLinQ’s pool of aggregated, de-identified patient data into real-world insights. The platform is designed to further ASCO’s mission of improving patient outcomes and quality, with the long-term goal of enabling the oncology community to learn from the experiences of millions of patients with cancer to help optimize the care of each patient.
All investigators working to improve cancer are invited to request access to distinct sets of aggregated, de-identified patient data with the purpose of investigating specific research questions.
“With CancerLinQ Discovery, we are able to expand the information network to anyone in the cancer community—not only health-care providers and research institutions, but also life sciences companies, government agencies, and individual researchers,” said CancerLinQ Medical Director Robert S. Miller, MD, FACP, FASCO.
Request CancerLinQ Discovery Data
Visit cancerlinq.org/research-database to find detailed information about CancerLinQ Discovery and to complete and submit the data request application.
Once the forms are complete and submitted, an initial screening of the application will commence to ensure the application materials are complete and the submitted request aligns with ASCO’s mission. Next, a high-level review of data availability, quality, and sufficiency will be performed. At this stage, general pricing may be provided to the requestor, as well as initial project specifications, prior to moving on to an official review. Cost will depend on a range of factors, including an organization’s nonprofit, government, or industry status; status as a subscriber of CancerLinQ; and the complexity of its research requests.
Each CancerLinQ Discovery data request application will be reviewed by the CancerLinQ Discovery Research & Publications Committee and approved before data access is granted. During this stage, the Committee may request additional materials or clarification from the data requestor.
The time from request submission to notification of the committee’s decision is expected to be about 6–8 weeks. If your request is approved, CancerLinQ staff will work directly with you to identify final contracting terms and detailed data specifications. CancerLinQ Discovery will never include identifiable patient and physician data, and users will only be able to access de-identified, anonymized data sets within the CancerLinQ Discovery platform. ■
CancerLinQ and CancerLinQ Discovery are products of CancerLinQ, LLC.
Originally published in ASCO Connection. © American Society of Clinical Oncology. “ASCO Data-Sharing Initiatives Supportive Innovative Cancer Research.” ASCO Connection, January 2018. All rights reserved.
