ASCO maintains a repository of information that qualified individuals and organizations may request for research purposes, e.g., ASCO COVID-19 Registry, meeting abstracts and datasets from the Targeted Agent and Profiling Utilization Registry (TAPUR) study (coming in 2024). Subject to the Information Sharing Policy of ASCO, ASCO will evaluate requests, determine whether the request meets ASCO’s standards, and determine the appropriate fee for the provision of ASCO Information.
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.
Coming in 2024:
Targeted Agent and Profiling Utilization Registry (TAPUR) Study data
The TAPUR study is a phase II, prospective, nonrandomized basket clinical trial that aims to describe the safety and efficacy of commercially available, targeted anti-cancer drugs prescribed for treatment of patients with advanced cancer that has a potentially actionable genomic variant. TAPUR uses a Simon two-stage design to study Food and Drug Administration (FDA)-approved targeted therapies that are contributed by collaborating pharmaceutical companies, catalogue the choice of molecular profiling test by clinical oncologists and develop hypotheses for additional clinical trials.
Data collected for the TAPUR Study include clinical and genomics data across non-randomized arms or cohorts. All patients who receive treatment with a drug available in the protocol are followed for standard toxicity and efficacy outcomes including tumor response, progression-free and overall survival as well as duration of treatment and high grade or serious adverse events. We plan to make available a subset of data from previously published cohorts and select data elements. Contact us to express interest in TAPUR Study data.
TAPUR Study Overview (pdf)
ASCO’s Available Datasets
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)
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)
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. For more detailed information about QOPI, please visit ASCO Practice Central.
Steps for Obtaining ASCO Information for Research
The following process should be followed for requests of ASCO datasets, except QOPI dataset
Step 1: Submit Request
- Complete the Research Project Proposal Application
Step 2: Review of Application
- ASCO will conduct an information availability and sufficiency check
- If the requested information is available and able to address the request, ASCO will determine whether the request is consistent with ASCO’s Information Sharing Policy.
- A team of ASCO staff 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 will notify the applicant of the decision (approved, denied, or requires additional information)
- If the request is approved, ASCO will send the applicant a draft Data Use Agreement and estimated fulfillment cost
- ASCO will provide the applicant with the 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 above-described CENTRA application. ASCO will make reasonable efforts to evaluate all compliant requests and retains sole discretion regarding whether or not to fulfill requests.