SETPOINT2 Quarterly Newsletter
February 2018
Inside
  • News from the US Research Advisory Committee
  • SETPOINT2 Goals, Milestones & Recognition
  • Stroke Survivor Story
  • SETPOINT2 Launches Mobil App
  • Upcoming Meetings & Dates

News from US
I offer a heartfelt thanks to our investigators, research staff, patients, families, stakeholders, and the Patient-Centered Outcomes Research Institute (PCORI) for their amazing support of the SETPOINT2 Trial. The trial is blazing ahead with many site activations, steadily increasing enrollment, outstanding stakeholder feedback, and robust data collection. 

In addition to new activations and enrollments, a few highlights of the last 3 months include the creation of a handy and user-friendly SETPOINT2 mobile app, which will be ready through your app-store by mid-February, and an amazing Research Advisory committee (RAC) meeting in December. 

The RAC meetings are intended to provide a forum for discussion and feedback between the investigators and our key stakeholders – most importantly stroke survivors and their family members. I enjoy them as an opportunity to learn more about what I do on a daily basis from the real experts. Every RAC meeting has left me exhilarated, as I go back to my neuro-ICU with a fresh perspective, ideas for improving the care I provide, and an ever-increasing appreciation for the intelligence, insight, generosity, and wisdom of our stroke survivors and their families. It’s a humbling and worthwhile way to spend the evening, and I hope you will each find a way to join in on at least one of these events before the trial is completed.

I wish you a clear mind, steady hands, and true vision in the New Year.
Best,
Dave

Dave Seder, MD
Maine Medical Center Chief of Critical Care Services
SETPOINT2 - US Principal Investigator

SETPOINT2 Goal Tracking
SETPOINT2 Awards & Milestones
NEW SITES ACTIVATED .
Congratulations & Great Work!

Charite-University Medicine Berlin
Berlin, Germany

University of Texas Health Sciences Center Houston, Texas

SPOTLIGHT
Ohio State University team pictured above - Principal Investigator: Dr. Michel Torbey. Research Coordinators: Nasir, Weiping, Mohammed, Areej and Sara.
3 Patients Enrolled - Well Done!

University of Heidelberg
Heidelberg, Germany
Principal Investigator: Dr. Silvia Schonenberger
Research Coordinator: Perdita Beck
7 Patients Enrolled - Way to Go!





Shout Out to University of Texas ! Began Screening in November, and now have 4 patient enrollments ! Principal Investigator: Dr. Jeremy Ragland, Research Coordinators: Elena, Glenda, Isabel, Angela, and Nina. Nice Work!


Email us at: setpoint@mmc.org
for suggestions, questions and acknowledgements.
New Appointments
Jose Suarez, MD, FNCS, FANA
Dr. Suarez is the US Medical Monitor for SETPOINT2. He was recently appointed Director of Neurocritical Care and Professor in the Departments of Anesthesiology and Critical Care, Neurology, and Neurosurgery at The Johns Hopkins University School of Medicine.
Eusebia Calvillo, BA, ADN, RN, CCRP
Ms. Calvillo is a Project Manager for SETPOINT2. She is a Research Associate at The Johns Hopkins University School of Medicine.
Patients & Families: Feature Story
Former stroke patient survivor and current US Research Advisory Committee (RAC) Member, Antrone "Juice" Williams, was open to sharing his stroke story for our quarterly newsletter.

Antrone “Juice” Williams has strong roots in basketball. He grew up in Chicago playing basketball and went on to play in college, as well as spent more than a decade playing for semi-professional teams throughout North America.

During September 2012, he was in Augusta, Maine training for an upcoming tryout for the NBA D-League, the organization’s minor league. While exercising before a game at a local YMCA, he began to feel dizzy, couldn’t feel his legs, and began slurring his speech. Luckily he was with a friend and after they called 911, he was taken to the hospital.

At the hospital, doctors determined Williams was having a hemorrhagic stroke. Williams was put into a medically-induced coma and transferred to Maine Medical Center in Portland, where doctors performed brain surgery to relieve pressure in his brain. Doctors told his family he had a 50-50 chance of survival and could be paralyzed.

Williams awoke from his comma unable to speak or walk. He had a long road of recovery with months of physical, occupational and speech therapy. Thanks to his determination, support of his family, and a great healthcare team, he has made a significant recovery. When asked if he had words of advice to give other stroke patients and survivors, Antrone said, “During my most difficult times, I leaned on God for understanding that I was now different. In times of depression and of lost hope continue to grow and talk about it with people that have been through the same things -- you have to reach out to stroke support groups in your nearest area.”

Antrone still struggles to find the right words at times; a common stroke after-effect called aphasia, and continues to have muscle weakness on his left side. But he considers himself very blessed and busy. Williams lives in Bowling Green, Ohio, and with his cousin, Damien Womack, he has self-published a book about his experience called A Walking Testimony: Stroke Survivor- My Second Chance . Antrone has two daughters, Keyanna and Takila, who are his inspiration. He also volunteers with the American Heart Association, Bowling Green Community Center, Woodland Schools, Special Olympics, and is a part of the US SETPOINT2 Research Advisory Committee (RAC). 

According to Williams, “I wanted to be part of the RAC because I'm living with the after effects of my stroke every single day and it is enriching to give the knowledge and understanding I now know to the hospital staff that saved my life.” He went on to say, “I have special gratitude to Dr. Seder and Barbara McCrum, RN Project Manager, (pictured above right with Juice and Lauren Connolly, RN Research Coordinator) for helping me in my journey and all doctors and nurses that cared for me through the process. I will forever be thankful and willing to help in any way I can.” 
SETPOINT2 Partnering Centers
Location | Site Principal Investigator
Click on the map to see locations.
NEWS
SETPOINT2 App in Progress!
Site Principal Investigators, Research Coordinators, Project Managers will soon be able to access needed SETPOINT2 study information from their phone or tablet. The app is currently in the development stage and will be available mid-February.
Neurocritical Care Society's 15th Annual Meeting 2017
The meeting occurred on October 10 -13 in Waikoloa Village, Hawaii. There were 16, SETPOINT2 participating sites represented and a robust discussion regarding Protocol 2. The event was followed by a competitive soccer match between US and International Sites - well done!
German RAC Meeting

The German RAC meeting took place on January 29, 2018, at Heidelberg University Hospital. Dr. Sylvia Schönenberger, German Trial Coordinator, updated attendees on PCORI and progress of SETPOINT2. Patients and families shared that RAC meetings are very helpful due to the exchange of experiences with others. One area discussed was the journey through rehabilitation and back to daily living.
Upcoming Events


Steering Committee DGNI/NCS Joint Meeting
Date: February 9, 2018
Location: Wurzburg, Germany

Want to contribute information to the newsletter? We'd love to hear from you. Please email us at: setpoint@mmc.org 

Visit the SETPOINT2 website for in-depth information for patients, families and investigators.


 
Research reported in this newsletter was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CER-1602-34137).