Research

Users can explore and request data via the PCDC Data Portal.

For detailed information about what data are available and how to request a dataset, please see PCDC Data Access and Governance.

Contributing data to the PCDC

Collaborators interested in contributing data for a disease area that is already part of the PCDC may contact our team to discuss key governance and data considerations as well as estimated project timelines. If approved, the process of creating, updating, and executing contracts, data sharing agreements, and Memoranda of Understanding (as applicable) typically ranges from one to six months depending on country, consortium, legal teams, and type(s) of data involved. After key governance processes have been completed, the collaborator works with PCDC developers to discuss data harmonization and integration into the commons and to resolve harmonization and quality control concerns. This data harmonization and integration process, dependent upon several factors, often takes roughly one to six months to successfully complete. Adding data to the commons may further depend on funding to support the transformation of data into a common data model.

Adding new cancers to the PCDC

Over time we plan to extend the PCDC to include additional pediatric cancers. Collaborators interested in creating a data commons for a new cancer should contact the PCDC team to learn more about the key steps, timeline, costs, and sustainability considerations. Time from initial discussions to the establishment of a disease-group consortium and creation of a Memorandum of Understanding (MOU) may range from three months to a year. Next, data use agreements (DUAs) are created, a data dictionary is established, and consortium leaders establish working groups to drive ongoing development and productivity. Once DUAs have been signed and the data dictionary has been established, PCDC developers can begin to map and harmonize the data and perform quality control checks. While the PCDC has been able to streamline the process of commons development, the ultimate pace at which a commons is developed and launched depends heavily on the frequency and intensity of involvement from collaborators, the number and diversity of consortium members involved, and the amount of initial funding available. The process from MOU sign-off to commons launch may take as little as six months to a year with substantial dedication from consortium leaders. Additional commons development, consortium meetings, and data integration continue at regular intervals from this point onward.

To date, the PCDC has only accepted data from multi-site cooperative groups or, in some cases, nationwide research organizations. Because of the time, resources, and effort involved in integrating each entity into the commons, the PCDC primarily engages with cooperative research groups. If you are an individual researcher or research site interested in joining the PCDC, please contact our team to discuss further.

Quality assurance is very important to the PCDC, so each data source is vetted for policies and procedures that help ensure high quality. In addition, the PCDC runs a series of QA/QC scripts to confirm internal consistency of the data. Our team works closely with data managers and stakeholders from all groups to help with the QC processes.

In some cases, pre-established consortia have approached the PCDC to create a disease-specific commons. In other cases, the PCDC works closely with leaders in a specific pediatric cancer type to identify interested cooperative research groups who are willing to form a consortium to guide commons development and steer future progress. This process may take months of emails, calls, and occasional international face-to-face meetings. Eventually, all committed parties sign a Memorandum of Understanding and establish the necessary contracts, data sharing agreements, and governance mechanisms to guide the consortium moving forward.