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NCI Support for Data Sharing
May 2nd, 2016
Warren Kibbe, PhD
NCI Center for Biomedical Informatics
warren.kibbe@nih.gov
@wakibbe
2
Key points
1. Making data FAIR
2. Genomic Data Sharing Policy
3. Data sharing Op Eds
4. ITCR
5. Genomic Data Commons
6. Questions: Path forward
3
FAIR –
Making data
Findable,
Accessible,
Attributable,
Interoperable,
Reusable,
and provide Recognition
Force11 white paper
https://www.force11.org/group/fairgroup/fairprinciples
4
NIH Genomic Data Sharing Policy
https://gds.nih.gov/
Went into effect January 25, 2015
NCI guidance:
http://www.cancer.gov/grants-training/grants-
management/nci-policies/genomic-data
Requires public sharing of genomic data sets
5
NIH and
Nature, November 2015
6
NEJM, January 2016
7
Science, March 2016
8
Changing the conversation around data sharing
 How do we find data, software, standards?
 How can we make data, software, metadata accessible?
 How do we reuse data standards
 How do we make more data machine readable?
 Assumption:
Data sharing enhances reusability and reproducibility
9
Vice President’s
Cancer Initiative
(aka Moonshot)
How do we enable meaningful,
patient-centered and patient-level
data sharing for cancer?
10
Genomic Data Commons – Cheat Sheet
 Is a Data Sharing Platform for Cancer Genomic Data
 A place for well-characterized cancer genomic data
 Spans from yeast and worm cancer biology to clinical trials
 Is built on the latest computer science and computer engineering
principles – object stores, graph databases
 Is the foundation for a Cancer Knowledgebase
 Enables the publication (through Digital Object Identifiers -DOIs) of
data sets, analyses, annotations of any data in the GDC
 Every object in the GDC is machine readable and supports FAIR
11
The Cancer Genomic Data Commons
(GDC) is an existing effort to
standardize and simplify submission of
genomic data to NCI and follow the
principles of FAIR – Findable,
Accessible, Interoperable, Reusable.
The GDC is part of the NIH Big Data to
Knowledge (BD2K) initiative and an
example of the NIH Commons
Genomic Data Commons
Microattribution, nanopublications, tracking the
use of data, annotation of data, use of
algorithms, supports the data /software
/metadata life cycle to provide credit and
analyze impact of data, software, analytics,
algorithm, curation and knowledge sharing
The NCI Genomic Data Commons User Interface
Home Page
The NCI Genomic Data Commons User Interface
Sample Browser
The NCI Genomic Data Commons User Interface
Sample Selection
Clinical data Biospecimen
data
Molecular data Files
uploaded
The NCI Genomic Data Commons User Interface
Data Submission Dashboard
Development of the NCI Genomic Data Commons (GDC)
To Foster the Molecular Diagnosis and Treatment of Cancer
GDC
Bob Grossman PI
Univ. of Chicago
Ontario Inst. Cancer Res.
Leidos
17
Support the Precision Medicine Initiative
• Integrate GDC with Cloud
• Expand data model to
include other data (e.g.
imaging and proteomics)
The Genomic Data Commons and Cloud Pilots
18
Data Sharing discussionsFor the Vice President’s
Cancer Initiative
19
How do we best highlight how
NCI Designated Cancer Centers
are already sharing data?
20
How do we best support the use of the GDC?
21
Can we use the GDC to build a sustainability model for
data consortia that include genomic data like
GENIE and ORIEN and make data open?
22
How do we move toward a ‘universal consent’ and
tissue/data acquisition protocol?
Assumption: this would simplify access to data
23
Does NCI need to / should NCI help
Cancer Centers build a cadre of folks who understand the
GDC, can transform and deposit data in the GDC, and
contribute knowledge and algorithms to the GDC and
Cloud Pilots?
If so, how?
24
What would an appropriate incentive for data deposition in
the GDC look like for Cancer Centers?
What clinical data makes a case in the GDC most valuable?
www.cancer.gov www.cancer.gov/espanol
26
Questions?
Warren A. Kibbe
warren.kibbe@nih.gov
Thank you

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NCI Support for Cancer Data Sharing

  • 1. NCI Support for Data Sharing May 2nd, 2016 Warren Kibbe, PhD NCI Center for Biomedical Informatics warren.kibbe@nih.gov @wakibbe
  • 2. 2 Key points 1. Making data FAIR 2. Genomic Data Sharing Policy 3. Data sharing Op Eds 4. ITCR 5. Genomic Data Commons 6. Questions: Path forward
  • 3. 3 FAIR – Making data Findable, Accessible, Attributable, Interoperable, Reusable, and provide Recognition Force11 white paper https://www.force11.org/group/fairgroup/fairprinciples
  • 4. 4 NIH Genomic Data Sharing Policy https://gds.nih.gov/ Went into effect January 25, 2015 NCI guidance: http://www.cancer.gov/grants-training/grants- management/nci-policies/genomic-data Requires public sharing of genomic data sets
  • 8. 8 Changing the conversation around data sharing  How do we find data, software, standards?  How can we make data, software, metadata accessible?  How do we reuse data standards  How do we make more data machine readable?  Assumption: Data sharing enhances reusability and reproducibility
  • 9. 9 Vice President’s Cancer Initiative (aka Moonshot) How do we enable meaningful, patient-centered and patient-level data sharing for cancer?
  • 10. 10 Genomic Data Commons – Cheat Sheet  Is a Data Sharing Platform for Cancer Genomic Data  A place for well-characterized cancer genomic data  Spans from yeast and worm cancer biology to clinical trials  Is built on the latest computer science and computer engineering principles – object stores, graph databases  Is the foundation for a Cancer Knowledgebase  Enables the publication (through Digital Object Identifiers -DOIs) of data sets, analyses, annotations of any data in the GDC  Every object in the GDC is machine readable and supports FAIR
  • 11. 11 The Cancer Genomic Data Commons (GDC) is an existing effort to standardize and simplify submission of genomic data to NCI and follow the principles of FAIR – Findable, Accessible, Interoperable, Reusable. The GDC is part of the NIH Big Data to Knowledge (BD2K) initiative and an example of the NIH Commons Genomic Data Commons Microattribution, nanopublications, tracking the use of data, annotation of data, use of algorithms, supports the data /software /metadata life cycle to provide credit and analyze impact of data, software, analytics, algorithm, curation and knowledge sharing
  • 12. The NCI Genomic Data Commons User Interface Home Page
  • 13. The NCI Genomic Data Commons User Interface Sample Browser
  • 14. The NCI Genomic Data Commons User Interface Sample Selection
  • 15. Clinical data Biospecimen data Molecular data Files uploaded The NCI Genomic Data Commons User Interface Data Submission Dashboard
  • 16. Development of the NCI Genomic Data Commons (GDC) To Foster the Molecular Diagnosis and Treatment of Cancer GDC Bob Grossman PI Univ. of Chicago Ontario Inst. Cancer Res. Leidos
  • 17. 17 Support the Precision Medicine Initiative • Integrate GDC with Cloud • Expand data model to include other data (e.g. imaging and proteomics) The Genomic Data Commons and Cloud Pilots
  • 18. 18 Data Sharing discussionsFor the Vice President’s Cancer Initiative
  • 19. 19 How do we best highlight how NCI Designated Cancer Centers are already sharing data?
  • 20. 20 How do we best support the use of the GDC?
  • 21. 21 Can we use the GDC to build a sustainability model for data consortia that include genomic data like GENIE and ORIEN and make data open?
  • 22. 22 How do we move toward a ‘universal consent’ and tissue/data acquisition protocol? Assumption: this would simplify access to data
  • 23. 23 Does NCI need to / should NCI help Cancer Centers build a cadre of folks who understand the GDC, can transform and deposit data in the GDC, and contribute knowledge and algorithms to the GDC and Cloud Pilots? If so, how?
  • 24. 24 What would an appropriate incentive for data deposition in the GDC look like for Cancer Centers? What clinical data makes a case in the GDC most valuable?