ASCO maintains an expansive repository of information that qualified individuals and organizations may request for research purposes, e.g., ASCO COVID-19 Registry, meeting abstracts, surveys and ASCO Quality Oncology Practice Initiative (QOPI®) data and eventually will include datasets from the Targeted Agent and Profiling Utilization Registry (TAPUR) study (expected to be available by Q4 2022). Subject to the Information Sharing Policy of ASCO, ASCO will evaluate requests and determine whether to provide the requested information. ASCO reserves the right to assess fees for the provision of ASCO Information. ASCO also is interested in collaborating with researchers in studies helping to support cancer policy initiatives, advance the practice of oncology, and improve the quality and efficiency of cancer care.
The request review process is managed by the ASCO Center for Research and Analytics (CENTRA). CENTRA’s mission is to conquer cancer by generating, integrating, analyzing, and sharing oncology data to foster innovation in research and patient care.
Newly Available Dataset
ASCO COVID-19 Registry Data
The ASCO Survey on COVID-19 in Oncology Registry (ASCO Registry) aims to help the cancer community learn more about the patterns of symptoms and severity of COVID-19 among patients with cancer, as well as how COVID-19 is impacting the delivery of cancer care and patient outcomes. The ASCO Registry collects baseline and follow-up data on how the virus impacts cancer care and patient outcomes for up to two years after a patient with cancer is infected with SARS-Cov-2. Explore the information further using two data visualization tools – the ASCO Registry Dashboard and Interactive Map of Oncology.
Dataset Description (pdf) | ASCO Registry Code Book (pdf) | Full ASCO Registry Description Package (zip)
The Medical Oncology In-Training Exam (MedOnc ITE) is a six-hour, 200 question internet exam. Case-based and presented in a multiple-choice format, the exam contains only one correct answer for each question. MedOnc ITE is not pass/fail in nature, but rather a low-stakes exam intended to provide a snapshot of the overall training program, as well as individual trainee knowledge. The exam is available worldwide and fellows/trainees take it at their home institutions in a formal, proctored environment.
Dataset Description (pdf) | Sample Dataset (xls) | Full In Training Exam Description Package (zip)
Meeting abstracts represent a full accounting of the research presented in oral or poster form at ASCO meetings over the past 40 years and reflect the state of the science as well as changes in oncology over the last few decades. Abstracts can be used to identify changes in practice, to pinpoint the timing of scientific breakthroughs, and provide a network analysis of authors.
Dataset Description (pdf) | Sample Dataset (pdf) | Sample Dataset (accdb) | Sample Dataset (csv) | Meeting Abstract Description Package (zip)
National Cancer Opinion Survey
Established in collaboration with the Harris Poll, ASCO’s National Cancer Opinion Survey tracks the U.S. public’s views on cancer research and care. The poll, supported by ASCO’s Conquer Cancer Foundation, was designed to be conducted annually to measure shifts in the public’s perceptions of a range of cancer-related issues over time. The online survey has been conducted annually since 2017, among U.S. adults aged 18 or over, with a portion of whom have/had cancer or have an immediate family member who has/had cancer.
Dataset Description (pdf) | Data File Codebook (xls) | Sample Dataset (xls) |Full National Cancer Opinion Survey Description Package (zip)
The ASCO Practice Census is the society’s largest survey of oncology practices, aiming to capture and describe changes in cancer care and oncology practice over time. ASCO estimates the total possible sample size of U.S. oncology practices at approximately 2,245 practices. The Society’s goal is to annually survey as many practices as possible.
Dataset Description (pdf) | Census Question Bank (xls) | Sample Dataset (xls) | Full Census Description Package (zip)
Quality Oncology Practice Initiative (QOPI)
QOPI is an oncologist-led, practice-based quality assessment program designed to promote excellence in cancer care by helping practices create a culture of self-examination and improvement. QOPI provides a standard methodology, robust library of quality metrics for oncology, and a collection tool to reliably and routinely assess care, inform quality improvement activities, and demonstrate quality to patients and external stakeholders. Practices participate in manual abstraction onto the secure web-based platform twice per year.
Dataset Description (pdf) | Sample Dataset (xls) | Full QOPI Description Package (zip)
CancerLinQ Discovery 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. CancerLinQ Discovery offers the broader oncology community access to distinct sets of de-identified patient data with the purpose of investigating specific research questions. For more detailed information about CancerLinQ Discovery please visit: cancerlinq.org
Steps for Obtaining ASCO Information for Research
Step 1: Submit Request
- Complete the Research Project Proposal Application
- For CancerLinQ Discovery, see https://www.cancerlinq.org/solutions/researchers
Step 2: Review of Application
- ASCO will conduct an information availability and sufficiency check
- If the requested information is available, ASCO will determine whether the request is consistent with ASCO’s Information Sharing Policy.
- A team of ASCO staff and/or volunteer Committee members will evaluate the request based on scientific merit, qualifications of the research team, concordance with ASCO's mission, priorities, and other criteria listed in the policy or determined by ASCO.
- At any time, ASCO may request additional information from the applicant
Step 3: Decision, Contract & Fulfillment
- ASCO notifies the applicant of the decision if the request is approved or denied
- If the request is approved, ASCO sends the applicant a draft Data Use Agreement and estimated fulfillment cost
- ASCO provides the applicant with requested information once the Data Use Agreement is signed and payment is received
Interested parties should email any questions. All data requests must be made through the CENTRA application process and are subject to review. ASCO will make reasonable efforts to evaluate all compliant requests and retains sole discretion regarding whether or not to fulfill requests.