NCATS Day 2019 Agenda

December 17, 2019

Natcher Conference Center, Room E1/E2

NCATS Day 2019: Conversations on Responsible Sharing of Data
8:30 a.m.–8:45 a.m.
 
Room E1/E2
Welcome

Christopher P. Austin, Director, NCATS

 

Penny Burgoon, Director, Office of Policy, Communications and Education, NCATS

8:45 a.m.–9:30 a.m.
 
Room E1/E2
 
An Interview: NCATS and Translational Science

NCATS focus is to advance the science of translation, which is the process of turning observations into interventions to improve health. In this interview with the NCATS Director, we will learn more about what translational science is and how NCATS is working to improve health.

 

Introduction: Alice Chen, Program Officer, Office of Rare Diseases Research, NCATS

 

Moderator: Christina Hartman, Senior Director of Advocacy, The Assistance Fund

Interviewee: Christopher P. Austin, Director, NCATS​

9:30 a.m.–10:00 a.m. Break  
10:00 a.m.–10:20 a.m.
 
Room E1/E2
Primer: An Overview on the Process for Collecting Data for Research

A general overview will be provided to address how and why data are collected for research.

 

Introduction: Elaine Collier, Senior Advisor to the Director, NCATS


Jennifer McCormick, Associate Professor, Department of Humanities, Penn State College of Medicine

10:20 a.m.–12:00 p.m.

 

Room E1/E2

Panel Discussion: Exchanging Perspectives on Responsible Sharing of Data

In this moderated panel discussion, stakeholders involved in biomedical research will reflect on case studies that highlight issues surrounding data sharing for research.
 

Introduction: Patricia Jones, Program Director, Division of Clinical Innovation, NCATS 

 

Discussion Facilitator: Marie Westbrook, Inspire Concepts

Federal Funders

  • Katherine Blizinsky, Policy Director, NIH All of Us Research Program
  • Rubin Baskir, Science and Technology Policy Fellow, NIH All of Us Research Program
Preclinical Research Development
  • Matthew D. Hall, Biology Group Leader, Division of Pre-Clinical Innovation, NCATS
Clinical and Translational Research Teams: Research Investigators, Patient and Community Advocates, Biomedical Ethicists
  • Brendan Lee, Chair in Molecular and Human Genetics, Baylor College of Medicine, Brittle Bone Disorders Consortium
  • Tracy Smith Hart, Chief Executive Officer, Osteogenesis Imperfecta Foundation
  • Lori E. Crosby, Co-Director, Innovations in Community Research, Division of Behavioral Medicine & Clinical Psychology, Cincinnati Children’s Hospital
  • Louisa A. Stark, Professor of Human Genetics and Director of the Genetic Science Learning Center, University of Utah
  • Eruera “Ed” Napia, Program Manager for Sacred Paths Youth Services and Special Projects at the Urban Indian Center of Salt Lake
  • Jennifer McCormick, Associate Professor, Department of Humanities, Penn State College of Medicine
Pharmaceutical Industry
  • Robert Wright, Global Head, Scientific Communications Governance, Clinical Data Transparency, Sanofi

 

12:00 p.m.–1:00 p.m. Lunch (on your own) Lunch Options in Natcher Conference Center (Building 45): Other concession stands, coffee bars, and dining centers can be found on the NIH Campus Food and Beverage Map. Buildings 38A and 12 are closest to the Natcher Conference Center (Building 45).
1:00 p.m.–2:30 p.m.
 
Rooms E1/E2 and F1/F2
Breakout Discussions

NCATS Day participants will join discussion facilitators and panelists from the morning session to offer their own perspectives on the sharing of data.

 

Introduction: Jessica M. Faupel-Badger, Director of Education and Training, NCATS; and Emily Carlson Marti, Communications Director, NCATS

 

Facilitators: Marie Westbrook, Inspire Concepts; and Linda Seestedt-Stanford, Inspire Concepts

2:30 p.m.–3:15 p.m.
 
Lobby area outside of Room E1/E2
Networking Session  
3:15 p.m.
 
Room E1/E2
Summary and Closing Remarks

Summary: Penny Burgoon, Director, Office of Policy, Communications and Education, NCATS; Marie Westbrook, Inspire Concepts

 

Closing remarks: Joni L. Rutter, Deputy Director, NCATS