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SETPOINT2 Quarterly Newsletter
October 2017
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Inside
- News from the German Research Advisory Committee
- SETPOINT2 Goals, Milestones & Recognition
- Stroke Survivor Story
- Upcoming Meetings & Dates
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We are off to a great start with the SETPOINT2 Study! I hope you enjoy the updates in this October Newsletter. Noteworthy for the University of Heidelberg Coordinating Center was our first German Research Advisory Committee (RAC) meeting which took place in July.
The RAC meeting was well attended and participants included stroke survivors, their family members, clergy, and other patient advocates and stakeholders who will support, inform, and advise the study throughout its conduct. The meeting included a slide presentation of the study background, design, structure, status, funding by PCORI, changes after funding, and goals. This was followed by a question-and-answer session on data safety, data management, and the validity of the telephone interview.
Overall, there was very positive reaction to the study and its design; and no concerns with safety as to trial or procedure. In summation, this was an excellent opportunity for meaningful two-way conversations and sharing of information and support. Those that attended were very supportive of the formation of the RAC, and expressed willingness to remain part of the group.
We’re looking forward to our investigators’ meeting in Würzburg in February, and activation of our clinical sites over the next few months
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Don’t forget to check out our website at
setpoint2.org
for more information and details on the SETPOINT2.
Thank you for your support and efforts.
Julian Bösel, MD
Principal Investigator
University of Heidelberg, Germany
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Progress Bar: 106 Patients Enrolled in SETPOINT2
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To date, 106 patients are enrolled into SETPOINT2.
Keep up the good work!
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SETPOINT2 Awards & Milestones
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Activated Sites: 8
Congratulations & Great Work!
University of Heidelburg
Heidelberg, Germany
Maine Medical Center
Portland, Maine
University of Heidelburg Neurosurgery Unit
Heidelberg, Germany
Yale University
New Haven, Connecticut
Henry Ford Health System
Detroit, Michigan
University of Maryland
College Park, Maryland
Duke Medical Center
Durham, North Carolina
Kadlec Regional Medical Center
Richland, Washington
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Top Enroller this quarter with
5 Patients Enrolled goes to University of Maryland, College Park, MD and
Dr. Nick Morris, Principal Investigator (Pictured above)
Well Done!
Other Sites with Enrollments
Maine Medical Center
Portland, Maine
Yale University
New Haven, Connecticut
Henry Ford Health System
Detroit, Michigan
University of Heidelberg
Heidelberg, Germany
for suggestions, questions and acknowledgements.
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Patients & Families: Feature Story
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Former stroke patient survivor and current US Research Advisory Committee (RAC) Member, Tyra Tarbox, was open to sharing her stroke story and her insights for our quarterly newsletter.
On September 17, 2009 after arriving home from work, Tyra Tarbox suffered a thrombosis, or clot, in her basilar artery, causing a brainstem stroke. This was a life-changing event -- she was in a coma for 9 days and after awaking had lost the ability to move her right side, eat, or see normally. Tyra spent 2 weeks at Tufts Boston Medical Center, 1 month at New England Rehabilitation Hospital in Portland (NERHP), and 7 months in rehabilitation with outpatient therapists. She spent this time learning to do what came so naturally before her stroke.
Though this period of time was difficult for her and stressful for her family (especially her husband and four children), today Tyra is doing well. When asked about her health, she responded, “I am fortunate that I have regained so much that people would not be able to tell what has happened, but I am not 100%. The minor changes in my life are just that, minor. Fatigue, balance issues, problem with crowds and loud noises have become my new normal."
Tyra’s advice to those recovering from a stroke is to keep positive, don’t give up, and be very patient. It’s clear that Tyra’s positive attitude played a part in her recovery; she received the NERHP Patient of the Year Award. When asked about her experience and what would be beneficial to share with SETPOINT2 Doctors and Research Investigators she spoke of her awareness while in her coma. “I don’t know how, but I knew I was far from home, and that something was very wrong with me. I was aware of people, when procedures were done on me, and sometimes even when people were touching me,” she recalled.
Tyra’s is using her valuable insights and experience as a RAC member. She decided to become a member very easily, "The debt of gratitude you feel to someone that played a big part in saving your life is indescribable. I have heard so many times that the stars were lined up for me that fateful night. Well, Dr. Seder and Dr. Malek are my stars and I could never thank them enough. When Dr. Seder asked if I would be involved in this RAC, I wouldn’t dream of turning him down."
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SETPOINT2 Partnering Centers
Location | Site Principal Investigator
Click on the map to see locations.
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Recent Events
German Society of Neurology Annual Meeting 2017 (DGN 2017)
Occurred on September 20- 23
Location: Leipzig, Germany
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Neurocritical Care Society's 15th Annual Meeting 2017
Occurred
on October 10 -13
Location: Waikoloa Village, Hawaii
More Information:
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Upcoming Events
US Research Advisory Committee (RAC) Meeting
Date: December 5, 2017
Location: Maine Medical Center, Portland, Maine
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German Research Advisory Committee (RAC) Meeting
Date: February 9, 2018
Location:
University of Heidelberg, Germany
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Want to contribute information to the newsletter? We'd love to hear from you. Please email us at: [email protected]
Visit the SETPOINT2 website for in-depth information for patients, families and investigators.
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Research reported in this newsletter was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CER-1602-34137).
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