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Childhood Cancer Data Initiative (CCDI) Symposium

2021 Annual Symposium

The National Cancer Institute hosted the CCDI Annual Symposium on November 9, 2021. Thirty-one expert speakers came together and represented the pediatric cancer research, care, and advocacy communities. Experts shared CCDI’s recent progress, identified next steps and priorities for the initiative, and listened to patients and advocates describe their needs and issues.

Watch the 2021 Annual Symposium recording.

Symposium Welcome

NCI Director Dr. Norman Sharpless opened the symposium with optimistic yet grounded remarks on the current state of childhood and AYA cancers, expressing hope that CCDI will contribute to progress in research and treatment. 

Today, childhood cancer remains the number one cause of death by disease in children past infancy in the United States. Some cancers have poor long-term survival, and others lead to lifelong adverse effects (which may be caused by the cancer itself or the side effects of cancer treatment). However, Dr. Sharpless shared his view that we are in a golden age in cancer research fueled by large amounts of data generated in the clinic and the lab. Challenges and barriers remain to collect these data from every child diagnosed with cancer. CCDI aims to address some of these challenges to lead to new discoveries and decrease the burden of cancer for individuals, their families, and communities. 

Naomi Bartley, an advocate, informaticist, and childhood cancer survivor, provided the keynote talk and graciously shared her story with the group. She discussed her treatment and its ramifications, the impact cancer had on her life as well as her daughter’s, and the importance of the work being done under CCDI. Her perspective provided an important reminder of the effect childhood cancer has on families and how that effect can last for a lifetime.

CCDI Progress

Speakers gave an overview of the goals of CCDI and successes to date. Since CCDI began in 2019, work has focused on five recommendations from the NCI Board of Scientific Advisors (BSA) working group. The BSA working group identified five overarching data sharing opportunities in childhood and AYA cancer: 

  1. enhance and reduce barriers to data sharing; 
  2. establish a federated infrastructure; 
  3. create a resource catalog of data, biospecimens, and tools; 
  4. aggregate preclinical testing and cancer model data to inform rapid clinical translation; and 
  5. develop a national strategy for testing and collecting data from every child. 

Work toward these recommendations is now underway and already yielding results. 

A key objective for CCDI is the development of a federated infrastructure to help manage and share data, including a searchable catalog of pediatric data, tools, and resources. Researchers presented their efforts to make headway toward improved data sharing, aggregation, and analysis in alignment with recommendations from the BSA working group. Progress was evident:

  • Advances are being made to better catalog existing data in the Childhood Cancer Data Catalog, which will provide researchers and clinicians with a way to understand what data are available across community resources. 
  • New tools, such as the Molecular Targets Platform, are being developed. Modeled on FDA’s Molecular Targets List, this platform will offer a target genetherapy collection and open-source pipeline for harmonizing data for more efficient drug discovery. 
  • MyPART–My Pediatric and Adult Rare Tumor Network, an NCI natural history study, is gathering information from patients diagnosed with rare cancers to search for gene mutations and biomarkers of disease. The network is also helping to inform the development of a Rare Pediatric Tumor Cell Atlas to analyze and aggregate data on these rare cancers. 
  • The NCI Surveillance Research Program team, which is currently developing the National Childhood Cancer Registry (NCCR), introduced NCCR*Explorer, an interactive, customizable tool to aid in searching and comparing cancer types, incidences, and trends. 
  • CIViC, a tool for the clinical interpretation of variants in childhood cancer, is the first and only open-access resource to provide integrated support for a searchable childhood data set with clinical variant interpretations. 

Key Focus Areas

The symposium focused on three areas of focus crucial to the success of CCDI and how we can learn from every child: 

  • molecular characterization for every child diagnosed with cancer, and how best to return those results to clinicians and families; 
  • extracting data from electronic health records (EHRs) in real-time to inform treatment and support new research discoveries; and 
  • engaging with children with cancer and their families broadly, including in underserved and underrepresented communities.

Learn from Every Child: Molecular Characterization for Every Child Diagnosed with Cancer

Understanding the molecular characteristics of pediatric cancers is vital for advancing precision oncology in childhood cancer. Sequencing the genomics of every child’s cancer will enhance the current knowledgebase on existing variants. 

To learn from every child with cancer, NCI established a Molecular Characterization Protocol, initially built on the Children’s Oncology Group’s Project:EveryChild, to perform molecular characterization on every child at diagnosis and provide information back to the child’s family and clinicians to help with treatment decisions. 

  • OncoKB, a database of cancer variants on the biology and therapeutic implications of cancer mutations, is the first FDA-recognized human variant database, but data for many more children need to be included to make this resource more powerful. 
  • Texas KidsCanSeq and Pediatric MATCH offer lessons learned from genetic testing, including the importance of having a genetic counselor on hand to deliver and discuss results or to address follow-up questions, whether those results are given in person or by telemedicine. 

CCDI speakers also gave insight into which types of genetic testing are proving most useful and how they are managed and conducted at different institutions. 

  • In comparing whole-genome sequencing (WGS), whole-exome, and RNA-seq, WGS was found to be most sensitive and performed better than panel sequencing. 
  • Researchers described how germline and tumor genomic testing are part of a standard of care for children with central nervous system tumors. Many tests are performed in under 3 weeks and results are available within 4 weeks. Other facilities using genetic testing reported longer turnaround times (up to 30 days). Medium-sized and smaller institutions and those with fewer resources often have more limited options to offer their patients. They may not be able to conduct molecular characterization themselves and may rely on partnerships with other institutions.   

Extract Data from Electronic Health Records (EHRs) in Real Time

EHRs offer rich data that document the patient’s full medical journey as well as long-term outcomes. Fast Healthcare Interoperability Resources (FHIR) is emerging as the de facto standard to support this task. Some of the tools for real time data flow using the FHIR standard include REDCap, which offers a way of taking some clinical data directly from the EHR, and ExtractEHR, which mines information from EHRs. 

Engage with Children with Cancer and Their Families

The symposium’s closing panel took a special focus on those whom this initiative will affect most directly: patients and their families. Themes addressed included: 

  • the importance of making molecularly informed medicine available to all patients, no matter their insurance status, location, or treatment facility 
  • the need for tumor typing to be offered early, with the data being made available to help other families 
  • the opportunity to handle some clinical care and clinical trials remotely, especially for those in underserved communities
  • the importance of greater data accessibility and availability, not only to break down existing silos for future research, but so that the data being collected can inform current treatment decisions and potentially improve outcomes

At the heart of CCDI is the desire to learn from and treat every child with cancer. This includes underrepresented minority and underserved populations. Not all children have equal access to care. The Children’s Oncology Group (COG), an NCI-supported clinical trials group, operates state-of-the-art centers, but COG facilities are not available in all parts of the country or to all patients with cancer. Intentional outreach activities need to be fully inclusive (racially, ethically, and culturally). 

The CCDI Engagement Committee is an important component of CCDI to help build relationships with patients, families, and communities, especially those who are underrepresented in the pediatric cancer research enterprise. 

Symposium Conclusion

CCDI has made significant progress over the past 2 years in developing a community of pediatric caregivers, data scientists, researchers, advocates, and patients and their families, all of whom are working toward a shared vision. The CCDI community has the potential to transform childhood cancer treatments and outcomes, and to act as a model for data sharing and research in adult cancers. In the coming years, CCDI aims to strengthen and grow its community while working towards its goals. 

2019 Annual Symposium

Scientific stakeholders and leaders from academia, government, industry, and advocacy organizations gathered in Washington, DC, July 29–31, 2019, for the first CCDI Symposium—a scientific meeting that gained a common understanding of the current issues and opportunities in childhood cancer research that could be addressed through enhanced data collection and maximum utilization of that data. 

Review the symposium agenda

Watch Recordings of the 2019 Symposium

Day 1: Monday, July 29, 5:00 p.m. - 7:30 p.m.

Day 2: Tuesday, July 30, 8:30 a.m. - 12:30 p.m.

Day 3: Wednesday, July 31, 8:30 a.m. - 12:00 p.m.

Poster Abstracts

NCI invited researchers to submit abstracts to be considered for poster presentations at the symposium.

Areas of interest for poster submission included research, methodologies, and tools that focus on any of the following categories:

  1. Scientific and clinical research data needs in childhood, adolescent, and young adult (AYA) cancers
  2. Establishing meaningful datasets for clinical care and associated research progress
  3. Building infrastructure to enable federation among disparate databases
  4. Extracting knowledge from data
  5. Developing adequate and equitable policies for shared data resources

View the accepted poster abstracts 

Abstracts have not been edited

  • Updated:

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