Monthly Webinar Series October 2019
Today’s Agenda Announcements & Trial Updates Sandi Cassard Engagement Plan Finalization – Incorporating Patient Partners Sandi Cassard Monthly Randomization and Rowing Competition Amanda Bistran-Hall Q&A All
Announcements & Trial Updates SANDI CASSARD
TREAT-MS Trial Updates We have 44 participating sites and 322 patients enrolled, including 8 patients randomized so far in the 1 st 2 days of October!! Only 578 to go!!! We unofficially extended enrollment through October 2019, but have formally asked PCORI for an extension through mid-2020. Thank you for your hard work to date! Let’s see how we can embrace the challenge ahead of us, keep the momentum going at high performing sites and encourage other sites to become great sites, too!!!
TREAT-MS Trial Updates Let’s celebrate our top 10 enrolling “STAR” sites (not including JHU) ! Norton Neurology Services 21 University of Alabama at Birmingham 20 Christiana Care Health Services 17 Swedish Medical Center 16 Geisinger Clinic 16 University of Florida 13 University of Kansas Medical Center 12 12 Advanced Neurology Specialists 12 University of California, Los Angeles 11 THANK YOU for leading the way! University of California, San Diego 11 Keep doing what you do well!
TREAT-MS Trial Updates Let’s encourage our next 13 enrolling sites (Rising STARS)! Baylor Scott and White Health 11 11 YOU New York University 9 University of South Florida 9 University of Washington 8 CAN Allegheny Health Network 7 Barrow Neurological Institute 7 DO Mayo Clinic 7 University of Miami 6 IT!!! Rush University Medical Center 5 University of Utah 5 Providence Health 5 Columbia University Medical Center & OMRF 4
TREAT-MS Reminders
TREAT-MS Reminders / News • Monthly Webinars and bulletins; important trial information • Bimonthly Enrollment newsletters; highlights randomizations per month, duration of activation, and trial-wide statistics • Enroll the most patients per month & win a $50 amazon gift card for your team • Recruitment materials available to your site & staff for this trial (patient brochure, physician flyer, and deck card); sign onto the trial website, http://treat-mstrial.org) => our team can also email you the materials • Engaging with patients/partners to use social media to get the word out about the trial and encourage participation has been IRB approved (more on this later)!
TREAT-MS – Weekly Communications Weekly enrollment graphs are sent to each site PI and lead coordinator – UAB example below TREAT-MS Trial UAB 25 20 15 10 5 0 Enrollment Commitment Current Enrollment
TREAT-MS – Weekly Communication Team of the Week highlighted every Monday (with photos and fun facts!) Madiha, Jesse, Sandi (data monitors), Jen (JHU coordinator) and Susan (biobanking manager) are on-call for any site questions.
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.
Engagement Plan Finalization – Incorporating Patient Partners SANDI CASSARD
Project Organizational Chart, Personnel
Engagement to Date • We have a patient and a patient-partner as members of the SAC • A patient with MS who is not enrolled in the trial, reviewed and provided feedback regarding the TREAT-MS brochures • One of the Data and Safety Monitoring Board (DSMB) members is a patient with MS (not enrolled in the trial), who reviewed the main consent materials • An additional MS patient (not enrolled in the trial) also reviewed the consent form and provided feedback
Proposed Further Engagement • Have each site identify a patient and/or patient-partner who can ensure potential TREAT-MS participants as well as others living with MS hear about, and get excited, about, the TREAT-MS trial • Our goal is to have our patient/partner liaisons, through interactions on social media, draw attention to the trial and contribute to recruitment success • We hope to identify other specific avenues of patient and patient- partner participant engagement not previously recognized, with the goal of broadening the scope of patient-participant outreach
Proposed Further Engagement The Central IRB has approved the below plan: Sites will identify a patient and/or patient-partner who wants to serve in this role • IRB approved recruitment materials will be provided to the patient and/or patient- partner so patient is well informed • Patient/partner will be encouraged to contact the site with questions • That patient/partner will engage other people with MS through social media but will check with site for accuracy of planned content prior to posting, without requiring IRB “stamp” of content review • The patient/partner will agree to direct all interested patients and all questions to the site PI/lead coordinator and will not engage in direct dialogue
How will this work? JHU has recently identified the patient-partner In process of educating that person about TREAT-MS $550 at year 5 (presuming ~22 hours of work total)
Suggestions for Identifying Your Patient-partner Possible people to approach for this role: 1) A person with MS from your practice who is active on social media 2) A former study patient who had a good experience and is enthusiastic about research 3) A partner or other family member of a person with MS who champions the cause 4) Someone who is excited to ‘spread the word’ and leverage social media to share the TREAT - MS key messages 5) Someone who recognizes and values the promise of clinical research to improve the lives of people living with MS and their families 6) Someone willing to join with you (site PI and study coordinator) to tailor communications and agrees to not engage in direct dialogue with interested patients Please reach out to us if you have any questions about engaging with your site’s patient -partner!
Monthly Randomization Race AMANDA BISTRAN-HALL
Monthly Randomization Race September’s Top Performers: Site Randomizations Johns Hopkins Hospital 2 Christiana Care 3 Baylor Research Institute 3 University of Massachusetts 3 Columbia University 2 University of Miami 2 University of California, Sand Diego 2
September’s Top Enroller: Christiana Care $50
The Rowing Competition *AS OF 10/2/2019
• The enrollment phase site competition that tracks performance across regional teams made up of 4-6 individual sites • It is meant to provide incentive and friendly What is it? competition in order to encourage screening and enrollment, completion of follow-ups, and timely data entry • Annual award ceremonies will recognize the winning teams with prizes – 1 st year ends October 31, 2019. Winners announced in November! • Individual standings at the completion of the trial will be used to determine authorship for trial results publication
Assigned teams West Midwest South Northeast Team A Team B Team C Team D Team E Team F Team G Team H Advanced Neurology University of Mayo Clinic Baylor Scott & White Norton Neurology Christiana Care New York University University of Specialists California at San Health Services School of Medicine Vermont Francisco Swedish Medical University of University of University of Kansas University of Florida, Vanderbilt University Stony Brook Columbia Center Washington Cincinnati Medical Center Gainesville Medical Center University Presbyterian University of Utah Dignity Health Ohio Health Rush University University of South University of Icahn School of Massachusetts Sacramento Medical Center Florida Health Alabama at Medicine General Hospital Birmingham Billings Clinic Barrow Neurological Oklahoma Medical Wayne State University of Miami University of Barnabas Multiple Allegheny Health Institute Research Foundation University Maryland Sclerosis Comp. Care Network Center Providence Health University of University of Central Texas Neurology Specialists Hackensack University of California San Diego Michigan Neurology of Tidewater University Medical Massachusetts Consultants Center Worcester Cedars Sinai University of Georgetown Geisinger Clinic California Los University Angeles
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