Harmonizing Pediatric Terminology: Update, Progress and Next Steps

July 13, 2015

Sponsor/Co-Sponsor(s)

Office of the Director, NICHD; National Cancer Institute (NCI)

Agenda

9:00 a.m.
Welcome and Opening Remarks
Steven Hirschfeld (PDF - 240 KB)
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), NIH, HHS

Jennie Larkin (PDF - 2.13 MB)
Office of Data Science and Big Data to Knowledge (BD2K) Initiative, NIH, HHS
   
9:15 a.m. Building Solutions: Overview of Terminology Building and Process
Margaret Haber or Larry Wright (PDF - 965 KB)
National Cancer Institute (NCI), NIH, HHS

George Chang (PDF - 115 KB)
NCI, NIH, HHS

Terminology Content Development and Experiences from Domain Areas (PDF - 87 KB) (Perinatology, Neonatology, Adverse Events, Rheumatology, Hematology, Oncology, Nephrology, Endocrinology and Infectious Diseases)
  • Robert Colbert
    National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), NIH, HHS
  • Deb Gipson
    University of Michigan
  • Michael Gravett
    University of Washington
  • Esi Morgan-DeWitt
    Cincinnati Children's Hospital
  • Charles Bailey
    Children's Hospital of Philadelphia (CHOP)
  • Charmian Quigley
    Consultant
  • George Siberry
    NICHD, NIH, HHS
Retrieving and Using Terminology
Theresa Quinn (PDF - 1.38 MB)
NCI, NIH, HHS

Structured Data Capture (PDF - 1.9 MB)
Representative
Office of the National Coordinator
   
10:30 a.m. Break
   
10:45 a.m. Update on Needs and Opportunities

Linking Health Care Delivery Support Systems and Research
  • Scott Moss
    Electronic Privacy Information Center (EPIC)
  • Michael Kahn
    University of Colorado
  • Charles Bailey
    CHOP
Working With and Harmonizing Existing Standards
  • Jerry Sheehan
    National Library of Medicine, NIH, HHS
  • Anna Zhao-Wong
    Medical Dictionary for Regulatory Activities (MedDRA)
  • Bron Kisler
    Clinical Data Interchange Standards Consortium
Registries, Spontaneous Reports, and Clinical Trials for Regulatory Analyses
  • Yaffa Rubinstein
    National Center for Advancing Translational Sciences (NCATS), NIH, HHS
  • Anne Zajicek
    NICHD, NIH, HHS
  • Ann McMahon
    Food and Drug Administration (FDA), HHS
Perinatology and Neonatology Across the Globe
  • Elizabeth Valls Crespo
    University of Bilbao, Spain
  • Michael Gravett
    University of Washington
  • Michael Padula
    CHOP
   
12:30 p.m. Lunch
   
1:30 p.m.
Informatics Roundtable
  • Dave Songco
    NICHD, NIH, HHS
  • James Cimino
    University of Alabama
  • Mathias Brochhausen
    University of Arkansas
  • William Hogan
    University of Florida
  • David Parrish
    National Institute of Allergy and Infectious Disease (NIAID), NIH, HHS
   
2:15 p.m. Proof of Concept Experience (PDF - 139 KB)
  • Adverse Event Validation with Nationwide Children's
  • Rheumatology Validation with Cincinnati Children's
  • NCI CTCAE v4.0 Alignment with MedDRA
   
3:15 p.m. Terminology Jeopardy!
 John Burklow
Office of the Director, NIH, HHS
   
3:30 p.m. Summary and Next Steps
   
4:00 p.m. Adjourn



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