TRNDS 2017 Agenda

Keynote presentations and panel sessions from the 2017 program

7:30 – 8:15

Registration & Breakfast

8:15 – 8:30am


Advancing Therapeutics for Rare Neurological Diseases

Erika Augustine
Co-Chair, TRNDS

Ray Dorsey
Co-Chair, TRNDS

8:30 – 9:00am

Keynote Address

Modernizing Clinical Trials by Removing Friction: Research as a Care Option

Craig Lipset
Head of Clinical Innovation, Pfizer

9:00 – 10:00am

Panel Discussion

Novel Methods for Natural History & Patient Engagement

Moderated by
Karl Kieburtz
Robert J. Joynt Professor in Neurology, University of Rochester

Komathi Stem
Chief Executive Officer & Founder, monARC Bionetworks, Inc.

Maria Picone
Founder, TREND Community

Amanda Christini
Co-Founder & President, Blackfynn, Inc.

Jiebo Luo
Professor, Department of Computer Science, University of Rochester

10:00 – 10:30am

Networking Break

10:30 – 11:30am

Panel Discussion

Novel Endpoints – Wearable Sensors & Applications for Generating High-Quality, Meaningful Data

Moderated by
Ira Shoulson
Director, Program for Regulatory Science & Medicine, Georgetown University

Deborah Kilpatrick
Chief Executive Officer, Evidation Health

Arthur Combs
Chief Medical Officer, MC10

Elektra Papadopoulos
Associate Director of Clinical Outcome Assessments Staff, Food & Drug Administration

Jane Rhodes
Senior Director, New Initiatives, Innovation Hub at Biogen



12:30 – 1:00pm

Keynote Address

The Patient/Caregiver’s Evolving Role – Care & Support to Investment & Entrepreneurship

Wendy White
Board Chair, Global Genes; Principal, Wendy White Consulting

1:00 – 2:00pm

Panel Discussion

Social Media Tools for Efficient, Effective Recruitment

Moderated by
Erika Augustine
Associate Director, URMC Center for Human Experimental Therapeutics

Sandra Shpilberg
Chief Executive Officer & Founder, Seeker Health

Kristin Schneeman
Director of Programs, FasterCures

Luke Gelinas
Fellow in Research Ethics, Petrie-Flom Center, Harvard Law School

Jen Farmer
Executive Director, Friedreich Ataxia Research Alliance

2:00 – 2:30pm

Networking Break

2:30 – 3:30pm

Panel Discussion

Virtual Visits to Facilitate the Conduct of Feasible Clinical Trials

Moderated by
Ray Dorsey
Director, URMC Center for Human Experimental Therapeutics

Michael O’Brien
President, Clinical Trials Division, AMC Health

Spyros Papapetropoulos
Vice President, Global Development Head, Neurodegenerative Diseases & Movement Disorders, Teva Pharmaceuticals

Tim Ehrhard
Director of Information Technology, National Organization for Rare Disorders

Dave Jacob
Chief Executive Officer & Co-Founder, ThinkGenetic

3:30 – 3:45pm


Erika Augustine
Co-Chair, TRNDS