Monthly Webinar Series November 2019
Today’s Agenda Announcements & Trial Updates Susan Emrich Patient Partner Interview Scott Newsome & Alan Levitt Monthly Randomization and Rowing Competition Shannon Hillery Q&A All
Announcements & Trial Updates SUSAN EMRICH
TREAT-MS Trial Updates October was a banner month – we enrolled 47 patients across sites! Thank you for your hard work to date! We have 44 participating sites and 363 patients enrolled as of November 4 th . Only 537 to go!!! We feel fortunate to have all of you on our team!!! Please continue to screen and enroll patients while discussions regarding a potential contract modification with PCORI are pending.
New Feature in VISION database Some patients have had difficulty logging in to VISION to complete their electronic Patient – Reported Outcome (ePRO) questionnaires. Coordinators can now check a box on the Patient login page to re-send login information and a link to the patient.
TREAT-MS Reminders
Save the Date – SAC Meeting Logistics Wednesday, February 26, 2020 – 1:30- 5:00 pm Hilton West Palm Beach, Florida ◦ If SAC member is planning to attend the ACTRIMS conference please make reservations to arrive Wednesday am. TREAT-MS will reimburse for hotel accommodations the evening of 2/26. ◦ If SAC member is not attending ACTRIMS but can join us in-person for the meeting, TREAT-MS has arranged a block of hotel rooms and will pay for Wednesday night lodging and reimburse for travel costs. Contact Susan Emrich semrich1@jhmi.edu to coordinate plans.
Trickle Down effect of Patient Partners ◦ TREAT-MS Charm City Ambassador Facebook post: shared 127 times Instagram post: reposted 21 times Mission Stadiums for Multiple Sclerosis (MS4MS): A couple of professional baseball players are sharing There are a few other people that have reached out to our patient ambassador who said they were going to continue to share and repost ◦ TREAT-MS Patient partner: Alan Levitt Patient representative on Study Advisory Committee
Patient Partner Interview SCOTT NEWSOME & ALAN LEVITT
Alan Levitt, MD Personal journey living with Multiple Sclerosis TREAT-MS Excitement for TREAT-MS & motivation as a patient partner Patient Partner
Alan’s Journey Physician at University of Maryland, academic background Diagnosed with Multiple Sclerosis in 1999 in the midst of career Started available treatment, frequent exacerbations continued. “It was almost like chopping down a tree with each exacerbation I had.” Retired from UMD due to worsening condition. Always keeping track of MS treatments throughout the years…
Alan’s Journey Escalation Treatment Paradigm Begin on lower potency Breakthrough occurs Move onto another higher potency therapy & so on... Hopefully achieve remission Ruggieri, S., Pontecorvo, S., Tortorella, C. et al. Induction treatment strategy in multiple sclerosis: a review of past experiences and future perspectives. Mult Scler Demyelinating Disord 3, 5 (2018) doi:10.1186/s40893-018-0037-7
Alan’s Journey Initial start of treatment: 1 st choice was between two medications that could affect his ability to maintain full employment as a physician ◦ A few years down the road, exacerbations continued, experienced fluctuation in improvement with worsening conditions ◦ Switched to take 2 medications while keeping in mind future options (combination of interferon with glatiramer acetate was done with a lot of people when there were fewer medications available; CombiRx study proved that this approach did not work) ◦ No improvement, wanted to move to higher efficacy drug (Tysabri), but PML cases were reported “Treatment choices are not just my own” ◦ Many patients include spouse/family in decision making process ◦ Re: risk of developing PML would affect oneself as well as loved ones ◦ Began Tysabri after years of debating and re-entry to the market ◦ Exacerbations suddenly stopped ◦ Post-Tysabri, what were his best options? Rituxan (Worked well), Gilenya (Didn’t work well)
Alan’s Journey Doesn’t mean that medicine is good or bad- that’s why TREAT-MS is so important! One drug may be great for me and not my neighbor at the next infusion pump We don’t know what medications work for what patients, we have our opinions ◦ This study is so important: studying medications for MS, for sub-groups, and try to get to some definitive approach or ideas to treatment
Alan’s Journey Treating a newly diagnosed and treatment naïve patient; it’s difficult to sort out which treatment would be best for that patient ◦ Treatment strategies: consider modestly effective based on clinical trials versus more aggressive higher efficacy. ◦ Do we need to treat everyone the same? ◦ Considering potential risks with each treatment, it truly is a joint decision in moving forward with a specific treatment- not an individualistic decision ◦ Set the stage for why we need to do , and personalize the treatment approach as best as we can for patients with MS ◦ Opinions are just opinions, unless you do a study that can help decipher one opinion versus the other or both, you don’t know where to go
Alan’s Journey ◦ MS affects younger population, often working full time ◦ Trying to fit infusions into one’s schedule is a challenge: busy schedules/around life events ◦ Retired in 2006, then after Tysabri, felt well enough to return to work in 2013 ◦ More challenging to get Tysabri after returning to work in order to fit it into his schedule ◦ Lifestyle may influence what treatment they choose over another, assuming they’re equally effective ( which we still don’t know )
Alan’s Journey Motivation to be a patient partner ◦ Most exciting is the fact that there is such a broad group of centers included in this national study ◦ Ability to subdivide populations initially is exciting ◦ Been waiting 20 years since my diagnosis for a study like this to be done “To see it happening, to the degree to which it is designed, is as close to a dream as possible” “These sorts of studies are important to guide treatment currently, but also to define the gold standard of the next generation of medications and how to test those.” “To have the ability to participate on the study that has the opportunity to start answering some of these questions, that’s why I jumped on it!”
Thank you, Alan & All patient partners! Patient partners offer a unique perspective on the TREAT-MS study Hopeful that the TREAT-MS trial will be able to help answer upfront what the best treatment strategy is for MS patients, help people to not go through as many challenges in their journey as so many others have, and try to personalize the treatment approach instead of a coin flip. “ I want future generations who may be diagnosed similarly to have the opportunity to know that whatever treatment they are started on is based on studies like the one you are doing.”
Monthly Randomization Race SHANNON HILLERY
Monthly Randomization Race October’s Top Performers: Site Total Randomized Swedish Health Services 5 Cedars Sinai Medical Center 4 Geisinger Clinic 3 Massachusetts General Hospital 3 University of South Florida 3 Baylor Research Institute 3 3 University of Florida, Gainesville University of Alabama at Birmingham 2 University of Utah 2 University of California, San Diego 2 Dignity Health Medical Foundation 2 Johns Hopkins Hospital 1
October’s Top Enroller: Swedish Health Services $50
The Rowing Competition *AS OF 11/4/2019
Rowing Competition Standings Northeast Team G West Team B West Team A NYU Hackensack U Stony Brook Dignity Health Barrow UCSF Advanced U of Utah Swedish Neuro Spc Barnabas Mount Sinai U of Washington UCSD UCLA Providence Cedars Sinai Billings Clinic Midwest Team C Northeast Team H JHU South Team E Mayo Clinic Ohio Health Geisinger U Vermont Columbia Presby U of U of South CentralTx Oklahoma U Mass U Cinn Neuro Miami Florida Health Mass Gen Allegheny Health MRF Worcester Norton UFL Gainesville Midwest Team D 1. Team E: 93 South Team F 2. Team A: 84 Baylor Scott & Rush KUMC 3. Team F: 74 White Health UAB Georgetown U of Maryland 4. Team H: 71 U Michigan Wayne State MCR/ 4. Team B: 71 Christiana Care Vanderbilt Tidewater 6. Team D: 53 7. Team C: 44 8. Team G: 30
Rowing Competition Standings Site Points Norton Neurology 204 University of Alabama at Birmingham 196 Individual Site Swedish Health Services 160 University of Florida Gainesville 160 Competition Christiana Care 155 Geisinger Clinic 134 Advanced Neurology Specialists 129 University of Kansas Medical Center 105 Allegheny Health Network 103 New York University 100
Rowing Competition: Year 1 Awards Ceremony Coming Soon During Upcoming Webinar
Open for Questions
Thank You for attending today’s webinar! Encore tomorrow at 9:00 AM EST The December Monthly Webinar will be held on the 4 th at 3 PM and 5 th at 9 AM EST
Recommend
More recommend
