One Mind and TBI in collaboration

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1 Inside: 2 Concussion Campaign 4 TBI Patient Story 6 PTS & TBI Survey 1 8 Donate! Update Winter 2015/16 ONE MIND WELCOMES COL. DALLAS HACK (RET.) TO THE ONE MIND TEAM It is with great pleasure that we introduce Col. Dallas C. Hack (Ret.) as our Medical Leader. Dr. Hack joins the One Mind team as an expert consultant who will be working directly with Dr. Mona Hicks, One Mind s Chief Scientific Officer. Together, they will represent One Mind to the scientific community, while exploring the opportunity for additional collaborations with researchers and organizations dedicated to finding better diagnostics and treatments for brain diseases and injuries. From 2008 to 2014, he served as the Director of the US Army Combat Casualty Care Research Program and the Chair, Joint Program Committee 6 (Combat Casualty Care). One of his major responsibilities was overseeing a portfolio of more than 500 projects directed at traumatic brain injury (TBI). In addition to One Mind, Dr. Hack is also currently serving as a part-time independent consultant for the NCAA and for the Brain Trauma Foundation, and has consulted with numerous organizations to advance research in Brain Health and transition the progress to improved clinical practice. I have had the opportunity to work with Dr. Hack both in the states and overseas. He is a professional s professional whose accomplishments are legend in and out of the Army. The addition of Dallas to the One Mind team allows us and our partners to take full advantage of his years of experience promoting and directing research to find better diagnostics and treatments for brain disease and injury we are indeed fortunate that he chose to be part of our groundbreaking work. - Gen. Peter Chiarelli (Ret.), CEO, One Mind Besides an impressive list of accomplishments, Dr. Hack is also a well-respected leader in his field. Prior to joining One Mind, Dr. Hack served as Senior Medical Advisor to the Principal Assistant, Research and Technology, US Army Medical Research and Materiel Command (USAMRMC) where he coordinated leading edge research focused on new techniques and products to save the lives and reduce morbidity of troops injured in the line of duty. Dr. Hack will add a tremendous amount of value in helping us further our collaboration within the scientific community. As was the case last year with the hiring of Dr. Hicks, Christmas has once again come early to One Mind with the gift of Dr. Hack joining our team. Cheers to new collaborations that will lead to finding answers sooner. Read more about Dr. Hack at onemind.org/about-us/staff. ONE MIND onemind.org 1

2 ONE MIND LAUNCHES CONCUSSION CAMPAIGN Tis the Season for Giving: help us raise $15,000 for patient follow-up hospital visits so researchers can BETTER prevent and treat concussions, and other brain illnesses MORE QUICKLY. Accidents happen, anywhere to anyone. Maybe it was from playing soccer or football, snowboarding, riding your bike, competing in synchronized swimming, slipping on ice, or falling off of a ladder. In sports, even with the best safety procedures in place, there are still accidents. We want athletes to be able to do what they love, and if an injury happens, help ensure they are provided the information they need to recover as safely and quickly as possible. Although strides have been made in brain research, our understanding of the brain has a long way to go some say brain research is where heart research was 50 years ago. One Mind is working with brain scientists across the US and around the world to find answers for concussions and other brain injuries and diseases by supporting researchers collaborating to come up with answers sooner. Every dollar helps! Whether it s $20, $100 or $750, patients will be able to make their follow-up hospital visits, which leads to successful brain research studies and better concussion treatments more quickly. Go to to learn more. #TreatBrainsBetter 2

3 TRACK-TBI AND TED STUDY INVESTIGATORS MEET IN NAPA More than 100 clinicians and scientists, along with government and private partners, met in Napa on November 9-10, 2015 to participate in the joint Transforming Research and Advancing Clinical Knowledge for Traumatic Brain Injury (TRACK-TBI) and Therapeutic Endpoints Development (TED) Investigators meeting. These two federally-funded studies together aim to not only discover the biological signatures of traumatic brain injury (TBI) and repair, but also to rapidly move these discoveries into clinical practice by obtaining regulatory approval for new tools and treatments from the FDA. Convening this joint meeting provided an opportunity to communicate recent progress from both the TRACK-TBI and TED studies, as well as to discuss and develop plans to address research gaps and opportunities that have emerged since the last meeting, in February TRACK-TBI has enrolled more than 1,250 of 3,000 total subjects, most of whom have received a comprehensive assessment at one or more points in time following their injury. TED expands the power of TRACK-TBI by compiling data from several large retrospective and prospective studies and enables comparisons of different study populations (e.g. children, adults, veterans, athletes, etc.). The aggregated data includes more than 5,000 subjects (mostly adults) with injuries ranging from mild to severe, which will be used to accelerate the discovery and validation of better diagnostic tools and treatments. The TRACK-TBI study has performed exceptionally well in patient recruitment and follow-up, and this remains a high priority for the study. Disseminating information about their accomplishments to date is another priority, with a goal of publishing 10 studies or projects within the next several months. The investigators also identified extraordinary opportunities for enhancing the research if resources become available: Adding neuroimaging studies to the control group assessments Increasing the follow up to two years post-tbi Expanding the study to include pediatric TBI WE ARE ALWAYS LOOKING FOR MORE PARTNERS. If you are interested, please contact development@onemind.org or call ONE MIND onemind.org 3

4 A PATIENT GIVES BACK Ron Bass is helping One Mind and knows from first-hand experience what it s like to be a traumatic brain injury (TBI) patient. A bicycle accident in 2014 left 72-year-old Ron in the emergency room at Houston Medical Center with a TBI. Fortunately for Ron, he was wearing a helmet, and although there was some brain bruising, he was told there were no permanent effects. While receiving care, Ron enrolled in the TRACK-TBI study that One Mind is helping to support. This National Institute of Health (NIH)-funded study is gathering information from over 3,000 patients at 11 research hospitals across the US to come up with better diagnostics and treatments for TBIs more quickly. Funding Support is Paying Off Since the TRACK-TBI study began in February 2014, the NIH has confirmed TRACK-TBI researchers are more than doubling return rates for comprehensive outcome assessment follow-up visits compared to previous NIH-funded longitudinal study return rates that do not have stipend or transportation cost support. How Does This Relate to Ron Bass? Besides contributing valuable information to the TRACK-TBI study, Ron decided to donate his stipend and transportation money back to One Mind so that even more TBI patients can benefit from clinical follow-up visits. Thank you for your selfless and caring act Ron! Unfortunately, the NIH grant does not cover patient stipends and transportation costs for hospital follow-visits. This is where One Mind s support comes in. At each of the 11 TRACK-TBI university research centers, One Mind is providing stipends and transportation costs to patients like Ron to ensure they return for their periodic clinical follow-up visits throughout the year; to keep this study on track as a longitudinal study. The Problem Without the incentive of patient stipends and transportation costs, many times the demands of everyday life take priority, and returning to a hospital for two hours of testing is difficult. Many people drop out of the study before the year is out. We need data from people like Ron who have experienced a TBI. Ron continues to bike. On weekends you re likely to find him on one of his bicycles taking other cyclists on tours around his hometown of Houston, TX. SUPPORT ONE MIND WHEN YOU SHOP THIS HOLIDAY Amazon will donate 0.5% of the price of eligible AmazonSmile purchases to One Mind. Same products, same prices, same service at smile.amazon.com. 4

5 ONE MIND PORTAL (APOLLO) UPDATE Beta testing of the One Mind Portal is continuing with investigators from the TRACK-TBI and TED projects. They have been exploring the Portal, its analytical tools, and some initial collaborative applications. One of the analytics tools that beta testers continue to use is transmart. The inclusion of transmart provides a community-driven analytics platform for collaborative translational biomedical research that allows researchers to explore curated clinical and outcomes data, neuroimaging and molecular measures through a single analytics environment. A big thanks to all beta testers for their feedback to improve this tool. Most recently, we ran the One Mind Portal Challenge for our beta testers as a way to gather feedback on some common analytic processes available to users of the Portal. For those participants who completed and correctly answered the challenge questions, they received a $25 gift card and were entered to win $500 cash. Congrats to those who answered the questions correctly, and thank you to those who participated! Coming soon is Phase II beta testing, where we will expand testing to include the CENTER-TBI project that is taking place in Europe. ONE MIND WRAPS UP BRAINS NEED ANSWERS CAMPAIGN TO SUPPORT PATIENTSLIKEME AND BRAIN RESEARCH In October, One Mind wrapped up its Brains Needs Answers campaign raising $34,480 to support patient-generated research on PatientsLikeMe, an online community of support for people suffering from post-traumatic stress (PTS) and traumatic brain injury (TBI). These funds will enable even more people to sign up and gain access to the PTS and TBI communities of support on PatientsLikeMe, as well as provide important data about a patient s conditions that research scientists can use to find answers. Our campaign centered around Veteran Trevor Martin, who shared that the PatientsLikeMe online PTS community literally saved his life when he was feeling low. The Brains Needs Answers campaign reminds us all of the critical need for better diagnostics and treatments to help everyone suffering from injuries and diseases of the brain. We are glad we were able to increase awareness of this important issue, and hope it leads to more answers sooner. Thank you to everyone who donated and helped us spread the word through this campaign! ONE MIND onemind.org 5

6 PATIENTSLIKEME RESEARCH SURVEY #1: RESULTS ARE IN! We have joined forces with our partners at PatientsLikeMe to learn more about what issues are important to the members of their online post-traumatic stress (PTS) and traumatic brain injury (TBI) communities. Over the coming months, members will be completing a series of surveys to better understand their PTS and TBI experiences, and their perspectives will be brought forward to change our understanding of PTS and TBI. Survey #1 Results PTS Community The number of people who participated exceeded our highest expectations 724 participants! Besides determining the top frequently reported symptoms, the quotes that were gathered from survey participants were also very impactful and telling. TOP 10 FREQUENTLY REPORTED SYMPTOMS Survey Participant Quotes: Other PTS Symptoms Trust issues with everyone, even the people closest to me. Can t leave my daughter anywhere without being worried. I feel that if I could sleep better, I may have the energy and the will to control the other symptoms with more ease. Chart total does not equal 100% Anxiety when anything is expected of me. Inability to do anything that is requested. I can do anything, as long as it is initiated by me and not expected. I m so angry that it spills out into every aspect of my life. I m so angry that it makes me hate and if I hate, I can t have relationship with anyone, including myself. I m tired of being hateful and angry all of the time. Don t like people, crowds and I don t like being touched. Stay tuned for our Spring 16 Newsletter, where we will be sharing Survey #1 s TBI Community results. 6

7 CENTER-TBI HAPPENINGS The enrollment for CENTER-TBI is progressing well, with over 1,300 patients recruited into the Core Data study and over 5,500 into the Registry. The study now has 49 active study sites across Europe, and hopes that the remaining 30 sites will be initiated before the end of the year. October 15 Meeting A meeting with lead investigators of TRACK-TBI and CENTER-TBI was held in Antwerp, Belgium. Discussions centered on the challenges encountered in both studies, and solutions were shared and considered. We are all excited about the upcoming analysis phase for these studies, where the results obtained will provide useful information towards finding better diagnostics and treatments for brain illness more quickly. Stay tuned! November Workshop One Mind collaborated on a workshop with the theme of data curation and data quality that was held in Paris, France. High quality and complete data are essential to the success of CENTER-TBI, and enhanced efforts are being developed to facilitate data curation and early analysis. Good curation of the data enables researchers to have a rich and trustworthy dataset, which is essential for future analysis and data sharing. We are looking forward to following up these discussions at the investigators meeting in Antwerp, Belgium in January JOIN UCSF S BRAIN HEALTH REGISTRY IT S FREE, QUICK AND SAFE! The Brain Health Registry is a new, online research registry that aims to build a pool of volunteers who are available for studies on brain disease and disorders, including traumatic brain injury. One-third of all costs for clinical trials are spent towards patient recruitment, yet trials are often delayed or even fail because of issues with the recruitment process. Developed by researchers at the University of California San Francisco, the Brain Health Registry aims to reduce the time and high costs associated with recruitment for clinical trials, ultimately leading to the accelerate discovery of treatments and cures. The Brain Health Registry is recruiting all types of volunteers to participate, including those with brain injury and those without it. Anyone 18 years and older can join. Participation is free, easy and entirely online. Once enrolled, volunteers are asked to answer questions about their medical history, current health, and lifestyle, and to take online brain tests that assess thinking and memory. Each step only takes a few minutes, and privacy is always protected. Volunteers are encouraged to return to the Brain Health Registry website every 3-6 months to retake brain tests and answer follow-up questions. The more people who participate, and participate over time, the more data collected thereby giving researchers the ability to test more theories, identify and refer more candidates for upcoming clinical trials, and test additional, new therapeutic approaches. One Mind supports the Brain Health Registry and asks you to consider joining. Please visit and help speed the path to cures for brain illnesses. ONE MIND onemind.org 7

8 DEVELOPMENT If you or someone you know is interested in supporting One Mind, please contact Sharon London, Director of Development, at or DONATE NOW Our work at One Mind is possible because of you. Visit donate.onemind.org to make your contribution to accelerating the development of improved diagnostics, treatments, and cures for brain health. Yes! I would like to make a gift in support of One Mind. Name: Check enclosed payable to One Mind for Research, Inc. Address: Please charge my credit card: City/State/Zip: Credit Card Number: Phone: CVV: Amount of Gift: Exp Date: / I prefer to make a recurring gift. Please charge my credit card $ per month. Please send donations to: One Mind 120 Lakeside Ave., Suite 200 Seattle, WA THANK YOU FOR YOUR SUPPORT! If you have questions about your gift, please contact Sharon London, Director of Development, at sharon.london@onemind.org or call