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Past Childhood Cancer Data Initiative Workshops

Childhood Cancer Data Initiative (CCDI) workshops focus on topics identified by the CCDI community as priorities to address. Insights from these events will help drive future CCDI activities. If you missed a workshop, access a recording and read the event summary below.

Note that workshop titles are abbreviated in the headings on this page, but full workshop titles are listed in the event summaries. Please contact if you have difficulty downloading or viewing workshop slides. 

November 2022: Rare Cancers

The CCDI workshop, Advancing a National Initiative for Rare Cancers in Children, Adolescents, and Young Adults, was held November 18, 2022.

Currently, there is an unmet need for a national effort to collect data on very rare childhood cancers to better understand their natural history and accelerate progress in the treatment of these cancers. The Childhood Cancer Data Initiative (CCDI) is looking to work with collaborating investigators, organizations, and advocates to coordinate this effort, but such a widespread initiative requires input and buy-in from the broader childhood cancer community.

The purpose of this workshop was to better understand the current landscape of observational and interventional studies in rare cancers to better inform how CCDI and collaborators can help create an infrastructure to collect and share existing and future data meaningfully, in addition to promoting collaboration and participation from the community.

Access the event presentation and event recording.

Workshop Key Focus Areas

The workshop included a morning and afternoon session. Each session had four presentations and a closing panel of scientists and advocates. The morning session provided a foundation for the meeting, patient perspective, and context on why this national effort is needed. In the afternoon session, discussions focused on the role of data collection, management, and sharing in this effort.

Morning Session

Presentation 1: Need for Coordinated Effort in Pediatric Rare Cancers

This presentation focused on why a coordinated effort to collect data on rare childhood cancers is needed, particularly given that rare tumors comprise a significant portion of childhood cancers. Challenges related to scaling individual efforts, selecting what rare tumors to focus on, and limited enrollment of patients with rare tumors in clinical trials were also discussed, along with the need for a unified framework and resources to study rare tumors.

Presentation 2: Patient Perspective

The workshop then transitioned to a presentation by a mother who had two children diagnosed with multiple rare cancers as a result of a p53 gene deletion. She shared her children’s stories and how her family has coped with their cancer journeys. Experiences like this family’s further indicate the need for a national effort to make faster progress in rare childhood cancers.

Presentation 3: Pleuropulmonary Blastoma/DICER1: Bedside to Bench and Back Again

Using pleuropulmonary blastoma (PPB) and tumors related to the DICER1 gene as examples, this presentation highlighted how much progress can occur in a rare childhood cancer when there is an organized effort to study it. The mission and goals of the International PPB/DICER1 Registry were discussed, along with the benefits of a multidisciplinary approach and collaboration in progressing research.

Presentation 4: Early Considerations of a Framework for a CCDI Coordinated National Rare Tumor Initiative 

During this presentation, a concept for a coordinated national study of rare childhood cancers was shared. The study would allow for the enrollment of as many participants as possible so that multiple rare cancers can be studied simultaneously more rapidly, efficiently, and consistently. It would also enable building a rare cancer registry, state-of-the-art molecular profiling, meaningful comparisons across multiple rare cancers, facilitation of patient navigation and treatment recommendations, and providing the scientific rationale as well as identification of external controls and possible identification of therapy targets for clinical trials.

Afternoon Session

Presentation 5: Core Data Elements

Both core and expanded clinical data will need to be collected from patients with rare childhood cancers. This presentation highlighted what data elements are required to advance a national initiative, based on lessons learned from genomics projects being conducted by the Dana-Farber Cancer Institute, Boston Children’s Hospital, and the Broad Institute.

Presentation 6: Connecting the Data: CCDI Data Ecosystem

This presentation focused on what data capture, management, and federation in the CCDI Data Ecosystem could look like. A summary of the CCDI Data Ecosystem’s objectives, infrastructure, and components were provided. There was also additional discussion on how the ecosystem could help in a national effort to collect and share data on rare childhood cancers.

Presentation 7: Patient Portals: Role and Utility for Patients and Research

Patient portals that show coordinated rare childhood cancer data are not currently available and the utility for patients needs to be explored. Using patient portal research from the Leukemia & Lymphoma Society, this presentation delved into why such a portal would be beneficial for patients and families to help navigate their care and submit self-reported data, and for providers and researchers alike who may be seeking these coordinated data or information related to clinical trial participation. Work performed through Count Me In, a Broad Institute initiative, was also used to illustrate how to partner with patients and engage them during the portal development process.  

Presentation 8: Potential Role for National Rare Cancer Tumor Boards

This presentation highlighted why coordinating and standardizing data from rare childhood cancer programs, networks, and clinical trials can ultimately optimize treatment and care for patients. The Texas Children’s Cancer and Hematology Centers’ Rare Tumor Board was used to demonstrate how a multi-institutional group of specialists could advise other clinicians on treating patients with rare cancers. Challenges related to this and similar efforts were also noted, including the need for dedicated resources, professional liability, data storage for future access, multidisciplinary participation, and research integration.

November 2022: Electronic Health Records

The CCDI workshop, The Importance of Electronic Health Record Data in Clinical Care and Research, was held November 2, 2022.

Electronic health records (EHRs) are systems that store health information in a digital format. They document important health data that can be shared or communicated between a patient and their provider. While EHRs are increasingly used in the United States to collect data and provide opportunities to better manage care for patients, these systems were not designed to readily share data with other systems or intended for research. Efforts to assess quality metrics in EHRs have been limited.

The focus of the workshop was to discuss ways to improve EHR data to make these data easier to use and share, with the goal to make discoveries faster in childhood cancer research. Insights from the workshop help inform Childhood Cancer Data Initiative activities and the development of NCI funding opportunities related to EHR data sharing and accessibility.

Access the event presentation and event recording.

Workshop Key Focus Areas

The workshop included four sessions focused on:

  • EHR data portability and interoperability
  • structured EHR data, data extraction, and translation
  • EHR-directed clinical trials
  • research use of EHR data

Session 1: EHR Data Portability and Interoperability

In this session, panelists discussed the issues surrounding equitable access to health data by patients and their providers and emphasized supporting rapid and seamless transfer of personal health data among care providers. Panel experts discussed the importance of empowering patients to provide their consent for how and where their data are used and the significance of access to personal data for a broad range of research uses.

Session 2: Structured EHR Data, Data Extraction, and Translation

Panelists in the second session outlined how data in EHR systems can best be structured and standardized to be most useful for patient care and across cancer research. Among other issues, experts noted challenges around variable data structures, a lack of consistency in using standards, and poor data accuracy for rare cancers, particularly in pediatric, adolescent, and young adult populations. Possible solutions and standards were also discussed.

Session 3: EHR-Directed Clinical Trials

The first afternoon session focused on how EHR data could facilitate new discoveries in clinical trials. Panelists discussed the critical need to obtain patient treatment and other relevant patient data from EHRs and use data to define structured eligibility criteria to match patients to clinical trials. They also discussed developing appropriate control arms and cohorts for new studies. Experts further outlined challenges related to regulatory and commercial requirements for data quality, particularly in rare cancers, before describing existing and possible new tools and approaches for potential solutions.

Session 4: Research Use of EHR Data

In the final session, panelists explored opportunities to use EHR data for validation and discovery in biomedical research and public health reporting, beyond clinical trials. They discussed possible approaches to address challenges around research access to EHR data, the structure and integration of these data, the variability of information available in EHRs, and institutional and regulatory limitations affecting research.

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