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PCDC Data Portal

Data Access and Governance

What data are available for research?

All of the data currently within the PCDC are derived from completed clinical trials. The data are formatted according to disease-based data dictionaries. Disease-based data dictionaries drive the PCDC Data Portal by defining a standard format for representing data collected from various sources.

Currently data are available for the following diseases:
- Rhabdomyosarcoma
- Neuroblastoma

How were these data elements selected?

The data dictionaries were developed through a consensus-based process and are regularly revised and updated. While many data fields are described in the data dictionaries, some data fields may not be available for individual patients.

Are all the disease data dictionaries finalized?

Some data dictionaries have been formally adopted, while others are still in development. Please see the README and/or Background Information tab of each data dictionary for development and version information. The disease experts continue to identify data elements that would enrich the commons and support more research. We have a standard process for expanding the data dictionary or making changes when necessary.

May I use your data dictionary in my own work?

This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.

How do I explore data on the PCDC Data Portal?

Anyone can access the PCDC Data Portal by visiting https://portal.pedscommons.org/ and creating a free account. Information on how to use the PCDC Data Portal can be found on our documentation page. For technical support and assistance with the PCDC Data Portal, please contact us at pcdc_help@lists.uchicago.edu.

Data Exploration

With your account, you are able to explore data dictionaries, perform cohort exploration, and generate data visualizations for patient cohorts you define based on data filters. Participant line-level data are not accessible using these tools but can be requested through the data/project request process.

Acceptable Use

Outputs from the cohort discovery and visualization tools are intended only for the purpose of determining feasibility of a proposed research study and early hypothesis exploration following generally-acceptable statistical principles. These outputs are neither suitable nor permitted for dissemination or publication.

How do I request data from the PCDC Data Portal?

If you wish to perform research with data from the PCDC, your proposed project must undergo review and approval, and a data use agreement must be executed.

  • You may request access to a specific dataset by following the project request process (see below).
  • Following the approval of the project request, the PCDC legal team will work with you to put the appropriate legal agreements in place and then the PCDC will make the data available.
Disease/Cancer Consortium Data Dictionary Publication Policy Project Request Form
★ Rhabdomyosarcoma INSTRuCT
Contact: Suzi Birz
RMS Link Link Link
★ Neuroblastoma INRG
Contact: Suzi Birz
NBL Link Link Link
◕ Acute lymphoblastic leukemia Contact: Enal Hindi ALL Link In development In development
◕ Acute myeloid leukemia INTERACT
Contact: Enal Hindi
AML Link Link In development
◕ Cancer predisposition C3P
Contact: Nia Moyer
C3P Link In development In development
◕ Embryonal (CNS) INSPiRE
Contact: Maya Maric
CNS Link In development In development
◕ Ewing sarcoma (Bone) HIBiSCus
Contact: Kat Blumhardt
EWS Link Link Link
◕ Germ cell tumors MaGIC
Contact: Lindsay Klosterkemper
GCT Link In development In development
◕ Hodgkin lymphoma NODAL
Contact: Suzi Birz
HL Link Link Link
◕ Non-rhabdomyosarcoma soft tissue sarcoma INSTRuCT
Contact: Suzi Birz
NRSTS Link Link Link
◕ Osteosarcoma (Bone) HIBiSCus
Contact: Kat Blumhardt
OS Link Link Link
◕ Retinoblastoma Global REACH
Contact: Maya Maric
RB Link In development In development

Key:
★: data available in the PCDC Data Portal
◕: data in progress

To request data from the PCDC, you will use the project request process defined by the individual disease consortium. For example, to request rhabdomyosarcoma data, you would follow the INSTRuCT process as detailed in the INSTRuCT Publication Policy. You can find Publication Policies and other detailed information for each disease with data available in the Data Portal through the links in the table above.

The PCDC disease consortium Executive Committee or designated group is responsible for review and approval of project requests associated with the consortium. You will receive feedback and next steps on your proposal following review. The review process will result in the project being accepted, rejected, or requiring revision. If revisions are requested, the project must be resubmitted to the disease consortium. If your project requires data from participants with more than one cancer type, each consortium will separately review your project proposal.

Review Process

For consortium-specific questions on this process, please contact the consortium manager listed in the table above. For general questions, contact PCDC Program Manager Kat Blumhardt.