SETPOINT2 Quarterly Newsletter February 2019

Inside Study Update SETPOINT2 Goals, Milestones & Recognition Feature Story: Stroke Survivor & SETPOINT2 Study Participant SETPOINT2 News

Study Update Colleagues, SETPOINT2 study progress continues as we head into our third phase of the study. We appreciate all the site efforts to date and would like to specifically call out the efforts with respect to follow ups.  We recognize how challenging six-month follow ups can be as they often require multiple calls and letters. Thanks to you for your efforts on this critical piece of our study – keep up the great work! Please take a moment to read the feature article this month profiling one of the US Research Advisory Committee (RAC) members, Christine Gifford. Christine also has the distinction of being a SETPOINT2 study participant. We all can benefit and learn from our RAC members experiences. We are appreciative of their willingness to share their stories and provide input that helps us improve our study practices, as well as build better patient relationships. 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 & Dave

Julian B ö sel, MD German Principal Investigator

David, Seder, MD US Principal Investigator

SETPOINT2 Goal Tracking

AWARDS & MILESTONES

NEW SITES ACTIVATED Congratulations & Great Work! University of Tennessee Knoxville, Tennessee 

SHOUT OUT In February several sites had multiple enrollments.Thank you to the following for a job well done! University of Maryland PI: Nick Morris & RC: Stephanie Sanchez Ohio State University PI: Bryan Gough & RC: Hamed Mohammad Yale University PI: David Hwang & RC: Zach King

APPOINTMENTS

Thomas Christianson, MD Welcome to Dr. Christianson. He is the Principal Investigator at the University of Tennessee Graduate School of Medicine in Knoxville, TN.

Feature Story: RAC Member Christine Gifford

Former stroke patient survivor and current US Research Advisory Committee (RAC) Member, Christine Gifford, shares her stroke story for our quarterly newsletter. She is pictured left with her caregiver team and pictured far left with her life partner, Lloyd Penny.

Christine Gifford suffered a hemorrhagic and an ischemic stroke in June 2017. For Christine, this traumatic event came on unexpectedly, with no warnings signs. Coming home after a Father’s Day dinner, she suddenly had a severe headache and began vomiting. Upon realizing her arms were limp, her life partner, Lloyd Penny, and her mother called 911. Christine went to the local hospital then on to Maine Medical Center.  Christine lives in Vassalboro, Maine, about 70 miles from Portland, and is supported by Lloyd, her parents—Anne and Dave Souza, and her son, Cameron Gifford. Since the stroke there have been many changes for Christine and her family.  At first her family had to cook and clean for her, as well as help with activities of daily living such as bathing. Eventually, Christine was able to take back some of those responsibilities. Even now everything takes a little more thought and time. One of Christine’s challenges is that she continues to have double vision, imbalance, and dizziness; as a result, she is unable to work or drive. Her ophthalmologist is hopeful her vision and imbalance issues will resolve overtime. In the meantime, her family is always there to help with errands and walking to prevent falls. “I am fortunate to have four people watching out for me,” says Christine. According to her, “even though they worry, the most important thing they do is staying positive!” When asked if she had words of advice for other stroke patients and survivors, Christine said, “Remember, recovery is very slow. It’s easy to get mad at yourself (and those close to you) because you are not the same as you used to be.” Gifford went on to say, “Try to embrace the person you’ve become and be thankful for all you’ve accomplished.” Christine’s story is unique because she is the only member of the US SETPOINT2 Research Advisory Committee (RAC) that is also a SETPOINT2 study participant. Since she was unable to make any decisions in those first few days, it was her caregivers that decided it was important for her to participate in the research. “Careful communication with caregivers is crucial. My family was distraught, angry, and sad for what I was going through, so it was very important to treat them with TLC,” said Christine. The SETPOINT2 study team at Maine Medical Center made sure her caregivers understood the importance of the research, timing of the study, and the pros and cons of participating during a very difficult time.  As to why she decided to be a part of the RAC, Christine said, “I want to help as many people as I can that have or will become part of this “group of patients”. Being part of the RAC not only helps others by sharing my story and insight, but it helps me heal too. Every day I’m faced with challenges and I work to conquer them. No one should ever give up, it just takes time."

SETPOINT2 Partnering Centers Click on the map to see locations.

NEWS

US RAC Meeting  The US Research Advisory Committee (RAC) meeting took place on December 11,2018 and was held at Maine Medical Center. Dr. David Seder is in second row, fourth from the right and Barbara McCrum, SETPOINT2 Program Manager is first row, second from right. The meeting was attended by stroke survivors and family members, clergy, Patient and Family Advisory Council representative, American Heart Association/American Stroke Association representative, SETPOINT2 US Study team, and hospital staff members.

New Patient Guide As a part of an effort to encourage and help support enrollment, a new patient guide has been developed. Sites can adapt the brochure to include site specific contact information. If you didn't get one please contact Barbara McCrum at [email protected] .

SETPOINT2 Video This video is another tool to use with potential study participants and their families to help explain the SETPOINT2 Study. A big thank you to Dan Good for producing the video, Sara Schrock for the voiceover, and Barbara McCrum, Project Manager Maine Medical Center. Click on the video to view or go to: www.setpoint2.org .

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. Visit SETPOINT2 Website   Research reported in this newsletter was funded through a Patient-Centered Outcomes Research Institute (PCORI) Award (CER-1602-34137).