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Childhood Cancer Data
Initiative
May 20, 2021
Children’s Brain Tumor Network @wakibbe
Warren A. Kibbe
2
NCI Childhood Cancer Data Initiative (CCDI) –
Building A Community
Childhood and AYA cancers are rare diseases: only 4% of diagnosed cancers
Acute need for datato support research
CCDI aims to build a
community focused on Pediatric and AYA Cancer
Holdren
Memo
Gabriella Miller
Kids First Research Act
21st Century
CURES Act (Dec)
Childhood
Cancer Data
Initiative
(Feb)
RACE for
Children Act
(Aug)
STAR Act
(Jun)
NCAB Ad Hoc
WG on Data
Science
Report (Jun)
201
3
201
5
201
7
201
8
201
9
202
0
201
4
201
6
NIH Genomic Data
Sharing Policy (Jan)
NIH Intramural Human
Data Sharing Policy
(July/Aug)
NCI Moonshot Public
Access & Data Sharing
Policy (Jan)
BSA Ad
Hoc WG
on CCDI
Report
History of Initiatives and Policy Leading up to CCDI
Cancer Moonshot
Blue Ribbon
Panel (Oct)
Initiatives
Policies
2021
Today
Feb Jul Dec May Oct Mar Aug
2019 2020 2021
Initiative Proposed -
SOTU Feb 5
Symposium Report
to BSA/NCAB Sep 4
BSA Ad Hoc
WG Approved Sep 4
Public
WebinarOct 8
BSA WG Kick-
off Nov 25
CCDI Funding Congressional
Approval Dec 2
BSA Ad Hoc Group
Report
Jun
15
Dec 2
First Steering Committee Meeting
Approved
Structure
BSA/NCAB
Feb 16
First All-hands
Meeting May 18
Report to
BSA/NCAB
Jun 13
First
Annual
Symposiu
m
Nov
CCDI
Symposium
Jul 31
CCDI Timeline
Working Group Formation & Kick-offs (Feb – Apr)
5
CCDI
improves
treatment
quality
of life
s u r v i v o r s h i
p
by
learnin
g from
every
child.
Ad Hoc Working Group in Support of the CCDI
Kevin
Shannon
(Co-Chair)
UCSF
Otis Brawley
(Co-Chair)
Johns
Hopkins
Peter
Adamson
Sanofi
Tom Curran
Children’s
Mercy
James
Downing
St. Jude
Julie Guillot
Leukemia &
Lymphoma
Society
Amanda
Haddock
Dragon Master
Foundation
Samuel
Volchenboum
U Chicago
John Maris
CHOP
Andrew Kung
MSKCC
Warren Kibbe
Duke
Andrea
Hayes-Jordan
UNC
Katherine
Janeway
DFCI
Douglas
Hawkins
Seattle
Children’s
CCDI Working
Group Report
Landscape of Pediatric/AYA Cancer Research Data &
Needs Analysis
Types of Data for Collection and Aggregation
Potential Barriers to Progress
Generating New Data
Distinction Between Research & Clinical Data
Engaging Diverse Array of Stakeholders for Input
Potential Opportunities for Transformative
Discoveries
24 specific
recommendations; 7
primary sections
CCDI Activities:
Building On
Recommendations
Enhance (Reduce Barriers) to Data Sharing
Establish Federated Infrastructure (cancer data ecosystem) –
sharing/ analyzing research & clinical data:
 Identify/ connect data (clinical, preclinical, research,
surveillance) & tools
 Develop enabling cancer technologies to enrich/ automate –
data capture, curation, harmonization, use, & publication
Create Central Resource Catalog of available pediatric/AYA data,
biospecimens, & tools
Develop a National Strategy of biospecimen collection/ archiving
(germline & tumor) & genomic testing (tx data  outcome; relapse
seq) for every child
Aggregate preclinical testing & cancer model data to inform Rapid
Clinical Translation (FDARelevant Molecular Targets List)
= Moonshot Blue Ribbon Panel
= ad hoc NCAB Data Science WG
= CTAC Informatics WG
= CCDI Symposium Discussion
= ad hoc BSA WG on CCDI
9
10
the whole
is greater
than the
sum of its
parts
12
CCDI Activities Support
FISCAL YEAR 2020 (Initial Funding of $50M)
 Laying the foundation
 Accelerating progress in childhood/AYA cancer
 Optimize future CCDI investments
FISCAL YEARs 2021 – beyond
CCDI Leadership actively planning research
opportunities to build on:
 Advisory recommendations
 Insight from diverse stakeholders
 Ongoing CCDI activities
13
Build a strong base:
Establish a federated
infrastructure (e.g. system
of connected data
repositories & patient
registries) to manage and
provide access to clinical
and research data.
Focus Areas for CCDI Activities
14
Establish Infrastructure to Manage &
Share Data
NCI Activities:
 Searchable catalog of pediatric data, tools, & resources
 Develop a Federated Pediatric Cancer Data Ecosystem
of research repositories & patient registries:
- National Childhood Cancer Registry (NCCR)* – link
clinical patient data (e.g. SEER, VPR, PPCR*, CCRN)
- Pediatric Preclinical Data Commons (PPDC)*
- Pediatric/ AYA Data from Care Centers (link/ transfer):
o NCI data repositories (rare tumors/ clinically-relevant
variants)
o NCCR patient-linked registry
15
Establish a Federated Pediatric Cancer Data Ecosystem:
 Underlying data science
infrastructure
 Enhanced cloud-computing
 Services linking clinical, image, &
molecular data
 Standards & tools for data
interoperability
 Data repositories (e.g. Pediatric
Preclinical Data Commons)
 Linked data (National Childhood
Cancer Registry) Genomics Data
Proteomics
Data
Cancer Models
Molecular
Imaging Data
Clinical
Trials
Treatments
Patient Outcomes
Cohort Studies
Electronic
Health Records
Preclinical
Data
Immuno-oncology
Data
Demographics
Clinical
Characterization
Discovery Science  Clinical Studies/Care 
16
Make data easy to use:
Develop and enhance
tools, methods and
pipelines for analyzing a
variety of data in different
ways.
Focus Areas for CCDI Activities
17
Develop Resources to Analyze & Use Data
NCI Activities:
 Develop or transfer tools & pipelines to NCI resources
 Automated curation of data (e.g. Natural Language Processing)
for refining, scaling & real-world data capture
 Computational methods & tools – annotate, integrate, translate
data from multiple repositories or registries
- Interpreting pathology images & patient reports*
- Identifying & validating molecular targets*
 Interactive data portals – engagement & resource accessibility
 Pediatric data model & terminology harmonization (PCDC)*
18
Assemble better data:
Create meaningful,
comprehensive data sets
to understand each type of
cancer and its effects over
time.
Focus Areas for CCDI Activities
19
Create Comprehensive & Meaningful
Data Sets for Discovery
NCI Activities:
 Sequencing & characterization:
- Germline & tumor samples (clinical trials: diagnosis,
relapse)*
- Pediatric pre-clinical models (PDX, cell lines)*
- Secondary cancers from survivors*
 Explore risk & susceptibility in patients/ survivors:
- Environmental exposures
- Metabolomic profiling (inherited predisposition)
 Develop & characterize cancer models (pediatric
brain & solid cancers: cell lines, organoids)
20
Improve treatments:
Data from biomedical
research and clinical care is
the foundation that informs
new treatments and
improves the lives of
patients, survivors and their
families.
Focus Areas for CCDI Activities
21
Moving Discoveries Into the Clinic
NCI Activities:
 Analyze molecular & clinical data to validate variants on FDA
Relevant Molecular Targets List*
 Establish & translate Rare Pediatric Tumor Cell Atlas data
to the clinic (MyPART)*
 Improve & enhance efficiency of clinical trials data:
- Comprehensive central monitoring & safety reports
- Increased quality of data (self-reports, PRO) collected
 Exploring genetic susceptibility to adverse events (post
treatment); & risks/benefits of proton therapy*
 Molecular Characterization Protocol
22
learn
from
every
child.
23
engage with CCDI
• Visit the CCDI website to learn more.
on the NCI website
• Review the BSA CCDI Working Group
final report
• Receive email updates from NCI on the
CCDI
• Contact the CCDI with questions about
engagement, ongoing activities, or
funding opportunities

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Childhood Cancer Data Initiative presentation to the Children’s Brain Tumor Network Investigator Meeting

  • 1. Childhood Cancer Data Initiative May 20, 2021 Children’s Brain Tumor Network @wakibbe Warren A. Kibbe
  • 2. 2 NCI Childhood Cancer Data Initiative (CCDI) – Building A Community Childhood and AYA cancers are rare diseases: only 4% of diagnosed cancers Acute need for datato support research CCDI aims to build a community focused on Pediatric and AYA Cancer
  • 3. Holdren Memo Gabriella Miller Kids First Research Act 21st Century CURES Act (Dec) Childhood Cancer Data Initiative (Feb) RACE for Children Act (Aug) STAR Act (Jun) NCAB Ad Hoc WG on Data Science Report (Jun) 201 3 201 5 201 7 201 8 201 9 202 0 201 4 201 6 NIH Genomic Data Sharing Policy (Jan) NIH Intramural Human Data Sharing Policy (July/Aug) NCI Moonshot Public Access & Data Sharing Policy (Jan) BSA Ad Hoc WG on CCDI Report History of Initiatives and Policy Leading up to CCDI Cancer Moonshot Blue Ribbon Panel (Oct) Initiatives Policies
  • 4. 2021 Today Feb Jul Dec May Oct Mar Aug 2019 2020 2021 Initiative Proposed - SOTU Feb 5 Symposium Report to BSA/NCAB Sep 4 BSA Ad Hoc WG Approved Sep 4 Public WebinarOct 8 BSA WG Kick- off Nov 25 CCDI Funding Congressional Approval Dec 2 BSA Ad Hoc Group Report Jun 15 Dec 2 First Steering Committee Meeting Approved Structure BSA/NCAB Feb 16 First All-hands Meeting May 18 Report to BSA/NCAB Jun 13 First Annual Symposiu m Nov CCDI Symposium Jul 31 CCDI Timeline Working Group Formation & Kick-offs (Feb – Apr)
  • 5. 5 CCDI improves treatment quality of life s u r v i v o r s h i p by learnin g from every child.
  • 6. Ad Hoc Working Group in Support of the CCDI Kevin Shannon (Co-Chair) UCSF Otis Brawley (Co-Chair) Johns Hopkins Peter Adamson Sanofi Tom Curran Children’s Mercy James Downing St. Jude Julie Guillot Leukemia & Lymphoma Society Amanda Haddock Dragon Master Foundation Samuel Volchenboum U Chicago John Maris CHOP Andrew Kung MSKCC Warren Kibbe Duke Andrea Hayes-Jordan UNC Katherine Janeway DFCI Douglas Hawkins Seattle Children’s
  • 7. CCDI Working Group Report Landscape of Pediatric/AYA Cancer Research Data & Needs Analysis Types of Data for Collection and Aggregation Potential Barriers to Progress Generating New Data Distinction Between Research & Clinical Data Engaging Diverse Array of Stakeholders for Input Potential Opportunities for Transformative Discoveries 24 specific recommendations; 7 primary sections
  • 8. CCDI Activities: Building On Recommendations Enhance (Reduce Barriers) to Data Sharing Establish Federated Infrastructure (cancer data ecosystem) – sharing/ analyzing research & clinical data:  Identify/ connect data (clinical, preclinical, research, surveillance) & tools  Develop enabling cancer technologies to enrich/ automate – data capture, curation, harmonization, use, & publication Create Central Resource Catalog of available pediatric/AYA data, biospecimens, & tools Develop a National Strategy of biospecimen collection/ archiving (germline & tumor) & genomic testing (tx data  outcome; relapse seq) for every child Aggregate preclinical testing & cancer model data to inform Rapid Clinical Translation (FDARelevant Molecular Targets List) = Moonshot Blue Ribbon Panel = ad hoc NCAB Data Science WG = CTAC Informatics WG = CCDI Symposium Discussion = ad hoc BSA WG on CCDI
  • 9. 9
  • 10. 10
  • 11. the whole is greater than the sum of its parts
  • 12. 12 CCDI Activities Support FISCAL YEAR 2020 (Initial Funding of $50M)  Laying the foundation  Accelerating progress in childhood/AYA cancer  Optimize future CCDI investments FISCAL YEARs 2021 – beyond CCDI Leadership actively planning research opportunities to build on:  Advisory recommendations  Insight from diverse stakeholders  Ongoing CCDI activities
  • 13. 13 Build a strong base: Establish a federated infrastructure (e.g. system of connected data repositories & patient registries) to manage and provide access to clinical and research data. Focus Areas for CCDI Activities
  • 14. 14 Establish Infrastructure to Manage & Share Data NCI Activities:  Searchable catalog of pediatric data, tools, & resources  Develop a Federated Pediatric Cancer Data Ecosystem of research repositories & patient registries: - National Childhood Cancer Registry (NCCR)* – link clinical patient data (e.g. SEER, VPR, PPCR*, CCRN) - Pediatric Preclinical Data Commons (PPDC)* - Pediatric/ AYA Data from Care Centers (link/ transfer): o NCI data repositories (rare tumors/ clinically-relevant variants) o NCCR patient-linked registry
  • 15. 15 Establish a Federated Pediatric Cancer Data Ecosystem:  Underlying data science infrastructure  Enhanced cloud-computing  Services linking clinical, image, & molecular data  Standards & tools for data interoperability  Data repositories (e.g. Pediatric Preclinical Data Commons)  Linked data (National Childhood Cancer Registry) Genomics Data Proteomics Data Cancer Models Molecular Imaging Data Clinical Trials Treatments Patient Outcomes Cohort Studies Electronic Health Records Preclinical Data Immuno-oncology Data Demographics Clinical Characterization Discovery Science  Clinical Studies/Care 
  • 16. 16 Make data easy to use: Develop and enhance tools, methods and pipelines for analyzing a variety of data in different ways. Focus Areas for CCDI Activities
  • 17. 17 Develop Resources to Analyze & Use Data NCI Activities:  Develop or transfer tools & pipelines to NCI resources  Automated curation of data (e.g. Natural Language Processing) for refining, scaling & real-world data capture  Computational methods & tools – annotate, integrate, translate data from multiple repositories or registries - Interpreting pathology images & patient reports* - Identifying & validating molecular targets*  Interactive data portals – engagement & resource accessibility  Pediatric data model & terminology harmonization (PCDC)*
  • 18. 18 Assemble better data: Create meaningful, comprehensive data sets to understand each type of cancer and its effects over time. Focus Areas for CCDI Activities
  • 19. 19 Create Comprehensive & Meaningful Data Sets for Discovery NCI Activities:  Sequencing & characterization: - Germline & tumor samples (clinical trials: diagnosis, relapse)* - Pediatric pre-clinical models (PDX, cell lines)* - Secondary cancers from survivors*  Explore risk & susceptibility in patients/ survivors: - Environmental exposures - Metabolomic profiling (inherited predisposition)  Develop & characterize cancer models (pediatric brain & solid cancers: cell lines, organoids)
  • 20. 20 Improve treatments: Data from biomedical research and clinical care is the foundation that informs new treatments and improves the lives of patients, survivors and their families. Focus Areas for CCDI Activities
  • 21. 21 Moving Discoveries Into the Clinic NCI Activities:  Analyze molecular & clinical data to validate variants on FDA Relevant Molecular Targets List*  Establish & translate Rare Pediatric Tumor Cell Atlas data to the clinic (MyPART)*  Improve & enhance efficiency of clinical trials data: - Comprehensive central monitoring & safety reports - Increased quality of data (self-reports, PRO) collected  Exploring genetic susceptibility to adverse events (post treatment); & risks/benefits of proton therapy*  Molecular Characterization Protocol
  • 23. 23 engage with CCDI • Visit the CCDI website to learn more. on the NCI website • Review the BSA CCDI Working Group final report • Receive email updates from NCI on the CCDI • Contact the CCDI with questions about engagement, ongoing activities, or funding opportunities

Notas do Editor

  1. The Childhood Cancer Data Initiative (CCDI) improves treatments, quality of life, and survivorship by learning from every child.
  2. CCDI is building a community centered around childhood cancer care and research data. The childhood cancer community is our focus. We want to engage Advocates Data Scientists Informaticists Health care providers Cancer Researchers Epidemiologists Foundations Pharmaceutical companies Technology Industry Clinical laboratories Policy makers Children & adolescents and young adults with cancer and their families CCDI is structured into working groups, teams, and committees that represent many of those pieces of the community. Allowing us to communicate within this diverse group, but also to share those messages with the broader community as demonstrated by the lines and dots on this graphic. Each of the three working groups has a charge: platform, protocol, or cohort. These groups meet and develop opportunities for moving their charge forward. Co-chairs bring summaries of these discussions to the steering committee. In addition to co-chairs reporting out, each working group is supported by programmatic and scientific staff who identify issues of cross-cutting significance that need to be addressed by all teams in a consistent manner. The cross-cutting issues team discusses issues identified by a working group or committee. The team assembles small groups of people, including CCDI members and others in the community to identify solutions that are reviewed by the steering committee. The engagement committee is responsible for bringing information in from and sharing information out with the broader community. Co-chairs also report out at steering committee meetings. The steering committee is comprised of all group co-chairs and additional NCI leadership. The committee provides strategic direction and feedback on working group activities. Co-chairs bring that information back to their group. Decisions about funding opportunities and programmatic next steps are made by NCI staff on the steering committee. In addition to communication through co-chairs, working groups are welcome to invite other CCDI members or individuals from the broader community to share in their discussions.
  3. Together we can bring together childhood cancer care and research data from across the nation to allow researchers to make new discoveries that improve treatments, outcomes, quality of life, and survivorship for patients.
  4. FISCAL YEAR 2020 (Initial Funding of $50M) Laying the foundation for accelerating progress in childhood and AYA cancer through activities that will optimize future CCDI investments FISCAL YEARs 2021 – beyond CCDI Leadership is actively planning research opportunities that will build upon advisory group recommendations, insight from diverse stakeholders in pediatric/AYA cancer communities, and ongoing CCDI activities
  5. NCI should federate data repositories & registries rather than try to build a singular/centralized data solution CCDI is an initiative (e.g. Moonshot) with multiple components that work together to optimize data utility & sharing in pediatric/ AYA cancers. CCDI is not a data base or repository. One key effort within CCDI is to establish a data ecosystem of registries & repositories, that are directly supported by or partner with NCI to make pediatric/ AYA cancer data accessible.
  6. You can see that some NCI programs have data stored and maintained not only in NIH and NCI repositories but also in data repositories that are maintained by our NCI grantees and/or children’s hospitals and cancer care centers. So it’s important that we can take these data repositories and connect them so the data they hold can be used better by the research programs that we’re funding. Connecting or federating these data repositories and identifying ways to improve collection, analysis, and use of these and new prospective data going forward will allow us to maximize every opportunity to understand and treat childhood and AYA cancers better. Establish a data ecosystem allowing critical information in childhood and AYA cancer research and care to be more easily shared and accessed Federate, interoperate, sustain. Connect and link genomic and molecular data repositories through a comprehensive infrastructure Gives investigators a more complete understanding of childhood and AYA diseases Creating Federated Data Infrastructure Support Cancer Centers (including associated pediatric research and care affiliates) to connect or transfer relevant childhood and AYA research and care data to NCI resources (clinical, preclinical, genomic, molecular, imaging, survivorship) Establish pediatric preclinical data commons that interacts with PedcBio Portal Develop user-friendly, publicly available database of multi-omic single cell analyses of rare childhood cancers Enable interoperability pilots with top 5 – 10 pediatric data repositories Establishing a National Childhood Cancer Registry - Leveraging and integrating existing data sources to develop a population level integrated system to support a variety of research in childhood cancer Infrastructure and support for registry linkages (cancer casees, treatment, subsequent cancers, radiology and pathology images) Develop knowledge graph for querying linked integrated data from NCCR, Refining and scaling of natural language processing algorithm for real time data capture Begin to connect data repositories (APIs, linkages): Conduct interoperability pilots with top 5 pediatric data repositories Link existing patient data resources to create a National Childhood Cancer Registry Establish molecular targets/pre-clinical data commons Develop a database of multi-omic, single cell analyses of rare childhood cancers Implement user-friendly interfaces to access integrated pediatric data within data commons and registries Develop computational methods and tools to integrate and interpret pediatric tumor data Facilitate the sharing of childhood cancer data from multiple sources through a connected data infrastructure The National Cancer Data Ecosystem is broader than NCI Enhanced cloud-computing platforms Essential underlying data science infrastructure Services that link disparate information, including clinical, image & molecular data Develop standards & tools data interoperability Sustainability & data governance for Ecosystem long-term health An NCI Cancer Research Data Commons will be one component
  7. More thoughtful tools for analyzing data will help answer important questions. Develop Computational methods & refine tools to annotate, integrate and translate data from multiple repositories or registries Tools for interpreting pathology images & patient reports Interactive data portals to access resources Implement User-friendly interfaces to engage stakeholders Support automated curation of data (e.g. Natural Language Processing) for refining, scaling & real-world data capture Pediatric data model and terminology harmonization (PCDC-H)
  8. Sequencing & characterization of: Germline & tumor samples from clinical trials (diagnostic, relapse)* Pediatric pre-clinical models (PDX, cell lines)* Secondary cancers from survivors* Establish & translate Rare Pediatric Tumor Cell Atlas data to the clinic (MyPART)* Develop & characterize cancer models from pediatric brain and solid cancers (cell lines, organoids) Enhancing understanding of risk & susceptibility in patients/ survivors Environmental exposures Treatments (proton therapy*, adverse events) Germline genetic susceptibility Metabolomic profiling (inherited predisposition)
  9. Research to analyzing molecular and clinical data for variants on FDA Molecular Target list Research to reduce barriers to PRO data collection Pilot projects to improve & enhance efficiency through: Comprehensive central monitoring & safety reporting Quality of data (including self-reports) collected Establish & translate Rare Pediatric Tumor Cell Atlas data to the clinic (MyPART)* Accelerate understanding of: Treatments (proton therapy*, adverse events) Germline genetic susceptibility Research to reduce barriers to PRO data collection Pilot project to improve & enhance efficiency of clinical trials data Molecular Characterization Protocol – Clinical service Accelerating the understanding of genetic susceptibility to adverse events after childhood cancer treatment Molecular characterization protocol Accelerating the understanding of the risks and benefits of pediatric proton therapy Aggregation and Analysis of Data for Targets on the FDA Relevant Molecular Targets List Childhood Cancer Data Initiative strategies to improve pediatric and adolescent/young adult self reported data in clinical trials
  10. The Childhood Cancer Data Initiative is completing the puzzle to learn from and help heal children, adolescents and young adults with cancer.
  11. CCDI email: NCIChildhoodCancerDataInitiative@mail.nih.gov NCI CCDI website: https://www.cancer.gov/research/areas/childhood/childhood-cancer-data-initiative BSA CCDI WG report: https://deainfo.nci.nih.gov/advisory/bsa/sub-cmte/CCDI/CCDI%20BSA%20WG%20Report_Final%20061620.pdf Subscribe to emails: https://public.govdelivery.com/accounts/USNIHNCI/subscriber/new?topic_id=USNIHNCI_223