Steering Committee Meeting

April 20-21, 2015
Bethesda, MD

Main Purpose

To celebrate the progress of the Collaboratory, hear updates from the Core Working Groups and Committees, plan for the implementation phase for the Multiple Chronic Conditions UH2s, hear updates and lessons learned from the UH3s, and discuss sustainability of the Collaboratory and the generalizable knowledge learned over these 3 years.

View the agenda (PDF)
View the participant list (PDF)

Monday, April 20, 2015

Welcome and Opening Remarks
Barry Coller, MD, Josephine Briggs, MD, and Lesley Curtis, PhD

PCORnet Update (PDF)
Rachael Fleurence, PhD

DRN Network Querying Capabilities/Investigator and NIH Initiative Use of the DRN (PDF)
Lesley Curtis, PhD, and Jeffrey Brown, PhD

Panel Discussion with Core Groups (PDF)
Moderator: Kevin Weinfurt, PhD

Biostatistics and Study Design
Liz Delong, PhD

Phenotype, Data Standards, and Data Quality (PDF)
Ed Hammond, PhD, and Rachel Richesson, PhD, MPH

Patient-Reported Outcomes (PDF)
Kevin Weinfurt, PhD

Panel Discussion with Core Groups
Moderator: Adrian Hernandez, MD, MHS

Stakeholder Engagement
Sean Tunis, PhD, MSc

Health Care Systems Interactions (PDF)
Eric Larson, MD, MPH

Discussion of Regulatory/Ethics Core Work Group Manuscripts
Moderators: Jeremy Sugarman, PhD, MD, and Kevin Weinfurt, PhD

Privacy Paper and Q&A
Deven McGraw, JD, MPH, LLM

Minimal Risk Paper and Q&A
John Lantos, MD

Panel Discussion from the NIH Bioethics Supplements
Moderator: Wendy Weber, MD, PhD, MPH
Jeremy Sugarman, PhD, MPH, Kevin Weinfurt, PhD, Susan Huang, MD, and Laura Dember, MD

IRB of Record (PDF)
Petra Kaufmann, MD, MSc

Breakout Sessions
Concurrent group discussions on several topics: biostatistics, regulatory/ethics, communicaiton dissemination, data sharing, lessons learned, and project best practices

Closing Remarks
Barry Coller, MD, Josephine Briggs, MD, and Lesley Curtis, PhD

Reception