Oral Presentation Advances in Neuroblastoma Research Congress 2016

INRG Data Commons – A User Journey (#38)

Samuel L Volchenboum 1 , Tzintzuni Garcia 1 , Brian Furner 1 , Allison Heath 1 , Yajing Tang 1 , Tervor Simmons 1 , Brian Leung 1 , Kyle Schmitt 1 , Suzi Birz 1 , Frank Berthold 2 , Domonique Valteau-Couanet 3 , Gudrun Schleiermacher 4 , Julie Park 5 , Akira Nakagawara 6 , Angelika Eggert 7 , Jorge Andrade 1 , Andy Pearson 8 , Robert L Grossman 1 , Wendy London 9 , Susan L Cohn 1
  1. University of Chicago, Chicago, Illinois, US
  2. University Hospital of Cologne, Cologne, Germany
  3. Chef du département de Cancérologie de l’Enfant et de l’Adolescent, Goustave Roussy, Paris, France
  4. Department of Pediatric Oncology, Institut Curie, Paris, France
  5. Fred Hutchinson Cancer Research Center,, Seattle,, WA, US
  6. Chiba Cancer Center, Chiba, Japan
  7. Charité Center Gynecology, Berlin, Germany
  8. Royal Marsden Hospital, Sutton and McElwain Laboratories, ICR, Sutton, UK
  9. Dana-Farber Cancer Institute, Boston, MA, US

Established in 2004, the International Neuroblastoma Risk Group (INRG) brought together international consortia to collect and standardize data on over 8,000 patients. New and updated information have been periodically added, and in 2013, an online cohort discovery tool was built and made available to investigators from around the world. In addition to allowing users to query the 18,000 patients with combinations of 32 clinical and other phenotypic variables, the site provides a real-time link to pull information from the COG Biopathology Center and neuroblastoma nucleic acid bank.

 In order to expand the usability and functionality of the database, the INRG Data Commons was established in 2016 as a way to link the phenotypic information to available genomic data. In a collaboration between the University of Chicago's Center for Research Informatics and Center for Data Intensive Science, a neuroblastoma data commons has been established that permits users to perform complex cohort discovery followed by genomic analysis, all in a protected, high-performance environment. These innovations, along with future expansion plans, have the potential to transform the discovery process for neuroblastoma and other malignancies.

In this presentation, you will be taken on a user journey from cohort discovery and project initiation through the analysis of phenotype and genotype data.

Learning objectives:

            What are the capabilities of the INRG Data Commons?

            What governance is in place for ensuring the privacy of the patients and the appropriate use of the data?

            How do I request access to the data?

            How can I contribute data?