Frequently Asked Questions
What is Project Data Sphere?
Project Data Sphere (PDS) is an independent, not-for-profit initiative of the CEO Roundtable on Cancer. In 2001, the CEORoundtable on Cancer was founded by President George H. W. Bush and is comprised of chief executives from more than 30 U.S.-based organizations representing diverse industries. Their charge was to accomplish together what no single company might consider alone to address issues in cancer prevention, diagnosis, and treatment. To accomplish this, PDS was launched as an initiative to convene experts from all sectors of oncology; foster collaboration and innovation in cancer research; and serve as a catalyst for openly sharing patient-level clinical trial data. Today, the PDS data sharing platform hosts over 150,000 patient-lives of clinical trial data from various trials across industry sponsors. Further, PDS has embarked on diversifying the data on its platform through unique partnerships with academia and research institutes, as well as through its own research programs.
What types of data does PDS share?
Currently the PDS platform shares clinical trial data, curated clinical trial datasets that include socioeconomic data, and curated datasets from prostate cancer clinical trials that were part of the DREAM Crowdsource Challenges. Further, unique data is being driven to the PDS platform through its four research programs focusing on machine learning algorithms in imaging, external control arms for various indications and trial designs, registries for rare cancers and bio-marker-driven indications, and immune-related adverse events. Soon, PDS will have available annotated images and associated data, patient-level data in the form of synthetic controls, and real-world patient-level data from rare cancer and immune-related adverse event registries. All data on the PDS data sharing platform are specific to the field of oncology. Visit the PDS website to learn more about the Prostate Cancer DREAM Challenge and these programs.
How is PDS sharing this data?
PDS shares data through this open-access data sharing platform that is hosted in partnership with SAS Institute (SAS). Through this truly collaborative partnership, SAS helps PDS to maintain the quality and integrity of the data and provides all PDS platform users free access to some of its most powerful data analytics tools. This platform enables users to share, access, analyze, and download data for secondary research.
Where does the de-identified patient-level data come from?
All data on the PDS platform is provided by industry sponsors (e.g. Pharma), collaborative research partners partners (e.g. RTI), and the PDS research programs and their collaborators. PDS continues to explore other opportunities for hosting more and unique data. Learn more about our valued data providers, partners, and collaborators.
Who can register as a user and access the PDS platform?
This platform is available to anyone who applies for access.
Can I share de-identified patient-level oncology data with PDS?
Yes! If you have the right to share data by the trial sponsor or governing institution you may share data with PDS. First, you must register as a user for our data sharing platform. Then you will have to apply to be a data provider. Once approved, you can begin the data sharing process starting with our Data Sharing Agreement.
Is there a cost to use the PDS platform and SAS analytics tools?
No! The platform, SAS analytics tools, and all other services are completely free for all registered users and data providers.
What information is needed to register as a user?
Basic identification information is required to register: name, e-mail, address, goals of research, and how you learned about PDS. PDS does not share our users' personal information with any outside vendors or parties without user consent.
Do I have to submit a research proposal?
No! You DO NOT need to submit a formal research proposal to access the platform. However, we do request new users to submit a summary of research goals during the application process.
Will I need to request access for each dataset?
No! Once registered, you will have access to all data on the platform with exception of data provided by the National CancerInstitute (NCI). However, you can make batch requests for multiple NCI datasets at the same time. This approval process goes through the NCI.
How long will it take to be approved as a new user?
Typically, new user requests are approved within 24hrs. However, some requests can take up to one week. All user requests are approved once verified that the user isn't subject to certain geographical or limited regulatory restrictions.
How long will I have access to the PDS platform?
Once your new user request is approved you will have access to the platform for one year. Users will be notified to "reactivate" their account before it expires. This allows PDS to ensure it has all our users' most up-to-date information.
What analytics tools are available on the PDS platform?
The following SAS analytics tools are available for use within the PDS platform at no cost to registered users:
- SAS® Visual Data Mining and Machine Learning
- SAS® Viya
- Compatible with Python and R via Jupyter Notebook
- SAS® Life Science Analytics Framework
Does the PDS platform require any data standards?
Yes. The Clinical Data Interchange Standards Consortium (CDISC) Study Data Tabulation Model (SDTM) format is the recommended format to share data. Specific details about any format used will be provided in the data descriptor document.
What legal agreements are in place to govern how data will be shared?
All new users enter into an Online Services User Agreement with PDS. Additionally, all data providers enter into a Data Sharing Agreement for each data provision. Copies of these agreements can be found on the Resources page.
Will users be required to submit research results?
No! However, PDS encourages users to publish and/or present their research how they see fit. Users are required to acknowledge Project Data Sphere in their publications or presentations if necessary.
What is TLS?
TLS stands for "Transport Layer Security." It is a protocol that provides privacy and data integrity between two communicating applications and is the most widely deployed security protocol used today. TLS is used for web browsers and other applications that require data to be securely exchanged over a network and ensures that a connection to a remote endpoint is the intended endpoint through encryption and endpoint identity verification. Client-server applications use the TLS protocol to communicate across a network in a way designed to prevent eavesdropping and tampering. There are known vulnerabilities associated with SSL 3.0/TLS 1.0 which allow adversaries to monitor/intercept traffic and decrypt secure transmissions. Updating to TLS 1.2 provides an enhanced level of encryption to protect our network.
Is my current browser TLS compliant?
Your current browser is unknown to PDS. Please check with the vendor for TLS compliant
Where can I find additional information about PDS?
Learn more about PDS on our website and follow us on Twitter and Linkedin (@ProjDataSphere). Inquiries should be sent through the Contact Us feature on the website or email at firstname.lastname@example.org.