SETPOINT2 Quarterly Newsletter July 5, 2017

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1 SETPOINT2 Quarterly Newsletter July 5, 2017 We are very pleased to introduce the SETPOINT2 newsletter. SETPOINT2 is a research study involving people with stroke and respiratory failure (breathing problems) in the United States and Germany. Look for our SETPOINT2 quarterly newsletter in your inbox to keep you updated on the latest SETPOINT2 developments and milestones. The United States Research Advisory Committee (RAC) meeting took place on June 28. The RAC is a group of stroke survivors, their family members, clergy, and other patient advocates and stakeholders who support, inform, and advise the study throughout its conduct. The meeting was a great opportunity for sharing and learning. We will be using this newsletter to facilitate two-way conversation about SETPOINT2, and to report our progress and results. We hope you enjoy seeing these highlights, and that you will consider responding to these newsletters using the contact information provided. Thank you for your support and efforts. Julian Bösel, MD Principal Investigator David Seder, MD US Principal Investigator

2 Meet the Coordinating Center Teams Coordinating Center Teams are dedicated to helping facilitate a number of very different research-related activities that range from data collection and analysis to overseeing all aspects of site study. Julian Bösel, MD Principal Investigator David Seder, MD US Principal Investigator Silvia Schönenberger, MD Medical Coordinator University of Heidelberg, Germany Barbara McCrum, RN, BSN Project Manager

3 Perdita Beck Research Coordinator Christina Klose Data Manager Meinhard Kieser Biostatistician University of Heidelberg, Germany Patients & Families Communication with patients and families is vital to SETPOINT2. We are excited about sharing dialogue and facilitating support. Our Research Advisory Committee (RAC) is one of the ways we can learn and share information. Our first US RAC meeting is scheduled for June 28, at the Dana Center located at Maine Medical Center. Keep an eye out for updates about our meeting, as well as future RAC meetings. If you would like to contribute information or ask questions, please us at SETPOINT2 Goal Tracking Goals for SETPOINT2 are critical success and milestone markers for the study and for the patient. Progress Bar: 95 Patients Enrolled in SETPOINT2

4 SETPOINT2 enrolling centers are expected to enroll and collect data on 380 patient participants across 20 centers in the United States and Germany by June 1, To date, 95 patients are enrolled into SETPOINT2. The sixth month Patient follow up assessment goal is 380. Look for data updates to this goal as well as number of sites enrolled for in the next quarterly newsletter. SETPOINT2 Enrolling Centers Location Site Principal Investigator Click on the map to see locations. Baylor College of Medicine Houston, TX Chethan Venkatasubba Rao Charite-University Medicine Berlin Berlin, Germany Farid Salih Columbia Presbyterian Medical Center New York, NY Jan Claassen Duke University Hospital Durham, NC Michael James Henry Ford Health System Detroit, MI Mohammed Rehman Kadlec Regional Medical Center Richland, WA Dale Hoekema Klinikum Augsburg Augsburg, Germany Hauke Schneider Klinikum Kassel Kassel, Germany Christian Roth Maine Medical Center Portland, ME David Seder Mayo Clinic Florida Jacksonville, FL William Freeman Mount Sinai Hospital New York, NY Neha Dangayach St. Joseph Health / St. Jude Medical Center Fullerton, CA Harry Peled Thomas Jefferson University Hospital Philadelphia, PA Fred Rincon University Hospital Dresden Dresden, Germany H. Schneider University Hospital Freiburg Freiburg, Germany Wolf-Dirk Niesen University Hospital Hamburg- Eppendorf Hamburg, Germany Stefan Kluge University Hospital of Cologne Cologne, Germany Christian Dohmen University of Heidelberg Heidelberg, Germany Julian Bosel University of Heidelberg Neurosurgery Unit Heidelberg, Germany Jan-Oliver Neumann University of Maryland College Park, MD Nicholas Morris

5 Ohio State University Columbus, OH Michel Torbey OSF St. Francis Medical Center Peoria, IL Deepak Nair University of Texas Houston Health Sciences Center Houston, TX Jeremy Ragland Yale University School of Medicine New Haven, CT Evie Marrcolini SETPOINT2 Awards & Milestones US Site Data To Date: Sites Activated: 4 of 15 Sites with Executed Sub-contracts: 10 of 15 Sites with IRB Approval of Protocol 2.0: 5 of 14 SETPOINT2 is proud to mark milestones and acknowledge sites for their outstanding work. Please see our website - for a full up-to-date listing of milestones, awards, and acknowledgements. And look for a special awards section in our next newsletter. us at: setpoint@mmc.org for suggestions, questions and acknowledgements. Special thanks to Barbara McCrum and Silvia Schönenberger for their diligent efforts in organizing the SETPOINT2 launch! Want to contribute information to the newsletter? We'd love to hear from you. Please us at: setpoint@mmc.org Visit the SETPOINT2 website for in-depth information for patients, families and investigators. Visit SETPOINT 2 Website Research reported in this newsletter was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CER ).