SETPOINT2 Quarterly Newsletter
September 2018
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Inside
- Study Update
- SETPOINT2 Goals, Milestones & Recognition
- Feature: Caregiver Story
- SETPOINT2 Mobil App
- Upcoming Meetings & Dates
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Study Update: News from Germany
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Colleagues,
Steady progress for the SETPOINT2 study continues on both continents. We are over halfway to our enrollment goal. Congratulations to our top German enrolling sites: Heidelberg and Berlin – well done!
Some of our best practices for increasing enrollment have been personal contacts with the local Principal Investigators, exchange of strategies and experience from the pilot study phase or current study phase, candidate recognition, work on informed consent of legal proxy, and organization of timing (e.g., weekends).
We are excited that our next German Research Advisory Committee meeting is next month. I have found these meetings to be an opportunity to learn a great deal from the direct experience of patients and caregivers. In particular, we have learned how we can improve the informed consent process, as well as how patients and families adjust to life after a stroke. Most importantly, I am grateful for their encouragement to carry on with this study.
Thank you to our investigators, research staff, patients, families, stakeholders, and the Patient-Centered Outcomes Research Institute (PCORI) for their continued support of the SETPOINT2 Trial.
Best regards,
Julian
Julian Bösel, MD
Principal Investigator
University of Heidelberg, Germany
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NEW SITES ACTIVATED
Congratulations & Great Work!
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University Hospital of Cologne
Cologne, Germany
University Hospital Freiburg
Freiburg, Germany
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Thomas Jefferson University Hospital
Philadelphia, Pennsylvania
Johns Hopkins University
Baltimore, Maryland
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Study Staff Profile:
Silvia
Schönenberger, MD
- Certified in Neurology and Neurocritical Care
- Consultant At University Hospital Heidelberg, Department of Neurology
- Research Interest: Peri-interventional management of acute ischemic stroke and airway management of patients with severe acute stroke.
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How many others are involved in your active research team that lead to your successful enrollments?
The whole team of our Neuro-ICU is involved. That means 6 residents who do the shifts on our ICU and 1 junior consultant who is certified in Neurology and also in Neurocritical Care. Additionally we have two study nurses who work for SETPOINT 2.
If you could identify one thing that contributes to your success what would you say it would be?
Be a team. Working together is crucial to success in everything you do.
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Shout Out
The following centers had multiple patient enrollments!
-University of Texas Houston Health Sciences Center (Houston, Texas)
-University of Maryland (College Park, Maryland)
-Maine Medical Center (Portland, Maine)
First Enrollments
Columbia Presbyterian Medical Center (New York, New York)
1st Enrollment: July 2018
Principal Investigator: Dr. Jan Claassen
Research Coordinators: Anna Calderon and Riva Letchinger
Email: setpoint@mmc.org for suggestions, questions and acknowledgements.
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Ahmad Ramadan,
MD
Welcome to Dr. Ramadan. He is the new Principal Site Investigator at Henry Ford Health System in Detroit, Michigan.
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Tom Christenson, MD
Dr. Christenson is going from Duke University to the University of Tennessee Graduate School of Medicine, Knoxville, TN
Evie Marcolini, MD, FACEP, FAAEM, FCCM
Dr. Marcolini is going from Yale University School of Medicine to University of Vermont Medical Center, Burlington VT
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Feature Story: Caregiver Insight
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Caregiver's Perspective: Lynn Phinney and her daughter, Danielle, share their family's experience taking care of a family member after a stroke.
May 1
st
, 2015 is a day the Phinney family remembers very clearly. They were together at the Knights of Columbus bowling league banquet when Doug Phinney suffered a stroke. The signs were clear – his smile was crooked, he was stumbling a bit and having difficulty speaking. Fortunately, for Doug his family knew the signs of a stroke and were able to take action quickly.
Like others with a family member that has had a stroke, the Phinney’s view this as life changing moment separating their lives between “before” and “after” stroke. There are things Doug can’t do anymore and his family has learned to be patient and adjust to this “new normal”. For example, trips out in the community take a little longer due to navigating entrances, seating, and bathroom locations. Life at home is also a little slower as they continue to work on daily living tasks such as getting dressed and bathing.
Despite these challenges, the Phinneys are determined to make the best of their new normal. “Doug has come so far and is still progressing. We went on a big family vacation to Mexico this year and didn’t let anything stop us,” said Lynn Phinney, Doug’s wife. “We keep Doug’s spirits up because we all know how differently things could have ended up that day.”
Crucial to Doug’s recovery was inpatient and outpatient rehabilitation after the stroke. Some of the best advice Lynn received was to save her time off from work until after he was out of inpatient rehabilitation. According to Lynn, “Saving my time off for once Doug was home and really needed round the clock care from family and friends was key to relieving a lot of stress
. “
Other things that have helped the Phinney family include: utilizing Lifeline services (a personal emergency response system, for more information call 1-800-660-4867) attending stroke support group meetings, and getting a layman’s description of his condition and treatment expectations which helped them understand and prepare for the future.
Current challenges for the family include worries about his safety and dealing with guilt around the things they can do that he cannot. Balancing the push to keep progressing and acceptance of what might be the limit is a struggle as well. Lynn is lucky though, “Only a few more months until I retire, though, so I am looking forward to being home with him more to work on some of these things.
”
As for the benefit of being a part of a research study and the SETPOINT2 Research Advisory Committee (RAC), both Lynn and her daughter, Danielle, felt that the emphasis on the extra follow ups and evaluations that come with being in a research study were invaluable. “ In our experience it was also helpful that the research proposal was presented in a way that didn’t make us want one outcome over the other,” said Lynn.
For the Phinney family, being a part of a study eased the feeling of helplessness. “The day we decided to enroll Doug in the program we finally felt like we had done
something
,” said Lynn. The family’s experience participating in the clinical trial was very positive and increased their desire to get involved with the SETPOINT2 RAC. According to Lynn, “We have seen personally how these initiatives can give back some control to family members when they feel powerless in a situation and are confident that SETPOINT2 study will be able to make a similar positive impact.”
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SETPOINT2 Partnering Centers
Location | Site Principal Investigator
Click on the map to see locations.
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INTERIM ANALYSIS
Interim Analysis is now underway for the first 33% of enrollment. Many thanks to all sites for their prompt answering of queries to prepare data for this review.
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SETPOINT2 App
Site Principal Investigators, Research Coordinators, Project Managers: if you are not using it, download this needed SETPOINT2 study information for your phone or tablet. The app is available for android and ios devices - go to the app or google play store and get it now!
Having trouble using the App?
Contact Barbara McCrum at mccrub@mmc.org.
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Please Note: There will be a SETPOINT2 Investigators Meeting on Wednesday, September 26th at 2 pm in the Estate Meeting Room. Investigators that attend the research meeting will receive $350 to offset travel costs for participation.
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German RAC Meeting
Date: October 26, 2018
Location: Heidelberg University Hospital
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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.
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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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