MS Experts Consensus Summit December 12-14, 2013

Wynn Las Vegas and Cleveland Clinic - Las Vegas, NV

“No Evidence of Disease Activity” as a Treatment Target in MS

Meeting Agenda: Thursday Dec 12th Afternoon and evening arrivals 6:30 – 9:00PM Buffet dinner available at Wynn Hotel (LaFleur 2 Room) Friday Dec 13th 7:00 – 8:00AM Breakfast buffet available at Wynn Hotel (Petrus Room) Session 1: No Evidence of Disease Activity: General Considerations 8:00 – 8:20AM Welcome and Introduction – Treating to Target in MS

Speaker: Richard Rudick, MD 8:20 - 8:45AM Chronic rheumatic diseases – from treatment to remission to prevention – our

experience Speaker: Michael Weisman, MD 8:45 – 9:10AM What is the evidence that treatment of RRMS reduces end organ damage?

Lessons from studies of brain atrophy. Speaker: Elizabeth Fisher, PhD 9:10 – 9:30AM The link between early disease activity and long-term outcome Speaker: Xavier Montalban, MD 9:30 – 9:50AM Targeting NEDA in the MS clinic: Core principals and controversies Speaker: Robert Bermel, MD 9:50 – 10:05AM Break 10:05 –10:45AM Panel Discussion: Significance of applying NEDA to MS practice: Opportunities

and challenges Panel Chair: Patricia Coyle, MD

Panelists: Aaron Miller MD, Revere Kinkel MD, Andrew Goodman MD, Anne Cross MD, Alexandra Goodyear MD, Andrew Solomon MD

Session 2: Discussing treatment goals on an individual patient level 10:45 – 11:00AM Discussing individualized treatment goals: The physician’s perspective Speaker: Gavin Giovannoni, MBBCh, PhD 11:00 – 11:10AM Discussing individualized treatment goals: The nurse’s perspective Speaker: Claire Hara-Cleaver, MSN, CNP

11:10 – 11:20AM Discussing individualized treatment goals: The patient’s perspective Speaker: Marjorie Heines 11:20 – 12:00PM Panel discussion: Discussing goals of therapy with patients

Panel Chair: Steven Galetta, MD Panelists: Robert Fox MD, Omar Khan MD, Laura Balcer MD, Bruce Cohen MD,

John Corboy MD, Le Hua MD, Aaron Boster MD 12:00 – 1:00PM Lunch Session 3: Bringing core measures of disease activity to the clinic 1:00 – 1:30PM Measuring disease status in 2013: Core measures to judge response to disease

modifying therapy Speaker: Ted Phillips, MD 1:30 – 1:50PM Relapses: How to assess and capture relapses in the clinical practice setting Speaker: Ellen Mowry MD 1:50 – 2:10PM MRI lesions: Options for measuring and documenting disease activity in practice Speaker: Rob Naismith, MD 2:10 – 2:30PM Physical disability: Practical core measures for clinical use Speaker: Fred Lublin, MD 2:30 – 2:50PM Break 2:50 – 3:45PM Discussion: What can we recommend for collecting core disease activity

measures in 2013 Panel Chair: Bruce Cree, MD Panelists: Tom Scott MD, Michael Racke MD, Benjamin Segal MD, Nancy

Sicotte MD, Mary Rensel MD, Clyde Markowitz MD, Sibyl Wray MD 4:00 – 5:30PM Personal time 5:30 – 6:00PM Bus to Keynote Event and Reception 6:00 – 7:00PM Reception – Cleveland Clinic Lou Ruvo Center for Brain Health 7:00 – 7:45PM Keynote: The Lou Ruvo Center for Brain Health: A building and a mission

Speaker: Larry Ruvo, founder of the Keep Memory Alive Foundation

7:45 – 10:00PM Dinner 9:00 – 10:30PM Shuttles back to Wynn hotel Saturday Dec 14th – Future Directions 7:00 – 8:00AM Breakfast buffet available 8:00 – 8:10AM Summary of Day 1 and Introduction of Day 2 agenda

Speaker: Robert Bermel, MD

8:10 – 8:20AM How can patient advocacy groups advance the “Treat to Target” concept?

Speakers: Nancy Law, The National MS Society Rosalind Kalb, MD, The National MS Society

Hollie Schmidt, The Accelerated Cure Project Session 4: Where do we go from here? 8:20 – 8:40AM Obtaining core measures of disease activity in the future: Novel methods Speaker: Jeffrey Cohen, MD 8:40 – 8:50AM Complexities and unresolved uncertainties in pursuing NEDA Speaker: Raj Kapoor, BMBCh, MA, DM, FRCP 8:50 -- 10:30AM Parallel Breakout Sessions

All three small groups to address the following questions: 1. Why target NEDA? What is the best evidence that it is of benefit? 2. In whom should we target NEDA? 3. How would you do it right now, when you get back to your practice?

a. How would you implement the core measures? b. How would you discuss it with your patients?

4. Is there a research agenda that would advance and expand the use of NEDA as a treatment target in MS?

10:30 – 10:45AM Coffee break 10:45 – 12:00PM Presentation of breakout group results – Areas of consensus and next steps Led by select breakout group members

Panelists: Carlo Tornatore MD, Ari Green MD, Alex Rae-Grant MD, Jack Simon MD, Tim Vollmer MD, Tanuja Chitnis MD, Myla Goldman MD

12:00PM - Departures

Breakout discussion group participants: Room Leader with Topic assigned: Group 1: *Suhail Dhib-Jalbut* 1,2 Benjamin Segal Aaron Boster *Jeffrey Dunn* 3,4 Bruce Cohen Andrew Goodman Omar Khan Tom Scott Timothy Vollmer Elizabeth Fisher Gavin Giavanonni Marjorie Heines Robert Bermel Myla Goldman Andrew Solomon Laura Balcer Group 2: Aaron Miller Michael Racke Jack Simon Rip Kinkel Mary Rensel Carlo Tornatore Tanuja Chitnis *Claire Riley* 1,2 John Corboy *Brian Weinshenker* 3,4 Clyde Markowitz Ari Green Richard Rudick Michael Weisman Alex Rae Grant Sibyl Wray Group 3: Raju Kapoor Patricia Coyle Jeffrey Cohen Ted Phillips Ellen Mowry Rob Naismith Anne Cross Claire Hara-Cleaver Fred Lublin Steven Galetta Bruce Cree Nancy Sicotte Le Hua Alexandra Goodyear Robert Fox *Emmanuelle Waubant* 1,2 *Timothy West* 3,4