1. health and fitness
2. disorders

Inside: 2 | Portal Update 3 | One Mind Summit 5 | CENTER-TBI 8 | Donate!
Update
Spring 2015
GEMINI PROGRAM PROGRESS
We are proud to report that One Mind is making headway to
radically accelerate the development and implementation of
improved diagnostics, treatments and cures for brain disease
and illness. As part of our Gemini Program, we are currently
in year one of a three-year study that combines the TRACKTBI and CENTER-TBI studies.
This impressive collaboration is leveraging millions of dollars
of brain research funding, which although funds the basic
research, does not support bringing these studies together.
Studies we are bringing together include:
•
•
•
TRACK-TBI – $18.5M grant uniting 11 universities,
plus an additional nine sites through a TBI
Endpoints Development (TED) grant
CENTER-TBI – €30M study with funding from the
European Union focused on 60 sites. One Mind
is providing support with neuroinformatics.
Additional TBI Studies – $130M for three
different National Institute of Health, Department
of Defense, and Veteran Affairs studies
Our initial goal is to investigate disease progression for
earlier, more accurate diagnosis and treatment. Towards this
end, TRACK-TBI started collecting data in April 2014 with
713 patients enrolled as of early March 2015. At this rate we
will surpass our overall of 3,000 by March 2017. CENTERTBI started collecting data as of Dec. 2014 with 114 people
enrolled as of early March 2015, with an overall goal of
5,400 by Dec. 2017. (You can read more details on this in the
TRACK-TBI Update article on page 6).
The impact of providing patient stipends and transportation
costs for follow-up patient visits has been significant. TRACKTBI researchers are reporting an impressive 80% overall
return rate. That has the effect of doubling the investment
by providing twice the data sets to draw upon as they get
close to discovering new, more accurate, diagnostics. In turn,
this raises the possibility of accelerating new treatments, and
some day cures, for brain disease and injury.
Another key goal is to identify biological indicators of the
causes and effects of diseases, or pathology, which is central
to our mission here at One Mind. As the TRACK-TBI genome
article on page 6 attests, this is already starting to happen.
Yet, there is still much more to do, and we need your help to
make this happen.
Please consider investing in One Mind.
Our ability to leverage the million-dollar government studies
above is paying off for researchers and hopefully those
afflicted with brain disease and injury. Your contribution
can support:
•
•
•
Patient stipends and transportation to increase
the sample size and findings for TBI patients
Ensuring data is being collected in the same
way so studies can be compared
Accelerating the discovery of new diagnostics,
treatments and cures for brain illness and injury
Our Development staff will be happy to talk with you and find a meaningful way you can support brain research and
collaboration. Please contact Sharon London, Director of Development, at [email protected] or
206-946-1769 for more information.
ONE MIND | onemind.org
1
WE ARE PLEASED TO WELCOME SHARON LONDON!
The One Mind team is excited to introduce Sharon London to its ranks as the
Director of Development. Sharon brings an extensive background in nonprofit
leadership and fundraising. She has worked internationally, with 4.5 years in
Southeast Asia where she was the Protected Area Advisor for the World Wide
Fund for Nature in Laos, and a U.S. Peace Corps volunteer at the National Park
in Thailand. Most recently, Sharon was the Director of Strategic Initiative at
EarthCorps.
We are looking forward to the development strategies that Sharon will bring to
One Mind, and know that her skill set will help us reach the fundraising goals that
we have set for 2015 and beyond. Please feel free to contact Sharon to discuss any
fundraising initiatives or ideas that you may have. Welcome aboard Sharon!
ONE MIND PORTAL (APOLLO) UPDATE
This spring brings an important milestone for the One Mind Portal – the completion of the tranSMART analytics platform
integration with the Portal’s marketplace. The marketplace is the 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.
P O R TA L
The completed integration of tranSMART with the marketplace will allow researchers to share datasets
with the community in conjunction with an environment where researchers can collaboratively
explore and interrogate these data. The tranSMART integration would not be possible without our
partnership with Thomson Reuters, who has been busy developing a number of data curation tools
for the tranSMART platform. Thank you Thomson Reuters for all of your work on this!
We have enjoyed working with the tranSMART community (e.g. through participation in the 2014 tranSMART Foundation
Annual Meeting) and Thomson Reuters in reaching this important milestone.
SHOP AMAZONSMILE –
GIVE TO ONE MIND
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.
2
4th ANNUAL
ONE MIND SUMMIT
COMING SOON!
Excitement is building as we prepare for the 4th Annual One Mind Summit on May 27th-29th in Arlington, VA.
Open Science and Collaboration in Action is the focus of this invitational conference, which brings together
an international coalition of renowned neuroscientists, policy makers and advocates, all striving to end brainrelated illnesses in our lifetime – with the needs of the patient as the guiding principle.
This year’s Summit is intended to build on the actions captured at the 2014 One Mind Summit. We will highlight
what can be accomplished to help patients with brain illness and injury when researchers adopt new models.
Our goals are to report on progress in the field of TBI and the collaborative models One Mind has helped to
establish, as well as the technological tools we are developing to enable collaboration that we believe will be
broadly applicable in neuroscience. Leaders will also be brought together from other neuroscience disease
areas to learn from each other and further develop innovative and cost effective methods of conducting
research to more rapidly advance diagnostics, treatments, and better patient outcomes.
Specific topics will include:
• One Mind CEO Update: Goals and Strategy
• Advancing Knowledge from Patient Experiences
• TBI – A Field Moving From Competition to Collaboration
• Technological Tools for Open Science and Collaboration
• TRACK-TBI and TED – Big Benefits From Collaboration
• Scientific Opportunities for Collaboration Around Common Mechanisms
• Other Models of Collaboration and Open Science
• 21st Century Cures
• From Discovery to Clinical Practice – Narrowing the Gaps and Connecting the Dots
We look forward to posting the Summit Proceedings in June.
ONE MIND | onemind.org
3
ONE MIND SUMMIT SPONSORSHIP OPPORTUNITIES
The 4th Annual One Mind Summit, entitled “Open Science and Collaboration in Action,” will take place on
May 27-29, 2015 in Arlington, VA. Last year’s Summit examined incentives and disincentives for data sharing
in neuroscience research and the challenges with the way that research is conducted today. This year’s Summit
will highlight what can be accomplished to help patients with brain illness and injury when researchers adopt
new models.
Please consider becoming a sponsor for the One Mind Summit.
Your support would showcase your commitment to the collaboration model for innovation that One Mind
strives to accelerate and implement.
For more information regarding sponsorship, or if you are ready to make a commitment, please contact
Sharon London, Director of Development, at [email protected] or 206-946-1769.
JOIN ONE MIND AT THE 2015 TBI CONFERENCE
Join TBI, concussion and PTS
researchers, and policy makers as they
review and discuss the latest news and
trends in research and funding at the
5th Annual TBI Conference.
New for 2015: TBI Day, April 14
Registration, info and agenda:
www.tbiconference.com
We are always looking for more partners.
If you are interested, please contact [email protected] or call 206-946-1769.
4
CENTER-TBI HAPPENINGS
Observational Study
The CENTER-TBI observational study is picking up
speed on its journey towards the recruitment target of
5,400 patients in the core cohort (full study protocol
testing) and 20,000 in the registry (basic testing –
patients who are recorded as presenting a traumatic
brain injury (TBI) upon arrival to the site). There are
now 43 sites across Europe, in 17 countries with active
recruitment. To date, a total of 114 patients have been
entered into the core data collection and 261 into the
registry. We wish the sites success with their efforts
and look forward to all sites becoming active within
the next month!
We are happy to report that because of One Mind’s
funding of the CENTER-TBI neuroinformatics piece it
is functioning very well at the International Neuroinformatics Coordinating Facility (INCF) in Stockholm.
Specifically, One Mind is funding the following:
• Electronic case report form (eCRF)
• Data storing
• Analytics platform
In the coming weeks work will continue to enhance
the platform by integrating tools for the analysis of the
rapidly incoming data.
Big Data Analysis International Workshop
In February, CENTER-TBI organized an international
workshop in Amsterdam that focused on Big Data
Analysis in TBI. This provided opportunities for faceto-face discussion between international experts
from other TBI studies, experts on data analysis,
and technical solution providers. This was the first
workshop in a series of three, where the opportunities
of harnessing the power of big data and predictive
modeling to advance diagnostics, treatments and
cures for TBI will be discussed.
Global TBI Data Collection
Connecting the power of high-performance computing
and high-dimensional clinical data, biomarker and
neuroimaging data will undoubtedly transform the field
of TBI, but will require state-of-the art technologies to
make sense of the large data sets.
CENTER-TBI is collaborating on a global scale and
joining forces with other large TBI studies, such as
TRACK-TBI in the U.S., and sister studies in China,
India and Australia. Thus, the aggregated TBI data that
is to be collected globally will be one of the richest in
medicine.
CENTER-TBI’s next steps will be to develop the analytics
platform – with the goal being future access to the One
Mind Portal, and advocating for openness to enable
the analysis of these massive amounts of data.
There has been a lot of buzz about “big data” and how
the analysis of big data has the potential to accelerate
the pace of discovery in science and medicine as we
extract knowledge and insights from large and complex
collections of digital data.
ONE MIND | onemind.org
5
TRACK-TBI UPDATE
Getting further, faster by sharing data and collaborating!
TRACK-TBI investigators have teamed up with researchers
from the Citicoline Brain Injury Treatment Trial (COBRIT) and
other top neurogenetic researchers to examine how genetic
factors may influence recovery after traumatic brain injury
(TBI). In January 2015, they published a landmark study,
“Association of a common genetic variant within ANKK1
with six-month cognitive performance after traumatic brain
injury” in the journal Neurogenetics. The goal of the research
was to better understand the factors that contribute to better
or worse outcomes following TBI. Currently, the only factors
known to correlate with outcome are age and injury severity,
and these factors do not fully explain
the wide variability in recovery that
has been observed in TBI patients.
This study is important for a number
of reasons. First, it further confirms
and establishes a role for a subtype
of a gene we all have, called ANKK1, to predict outcomes
following TBI. ANKK1 is involved in the regulation of
dopamine, a neurotransmitter that propels reward-motivated
behavior and motor control, among other brain functions.
The study findings extend previously reported results that a
particular variation in ANKK1 that some people have may
adversely impact recovery following TBI as measured by
patients’ performance on cognitive tests. This represents a
major step toward identifying a subset of patients that may
have a genetic predisposition to an unfavorable outcome,
and could help us to both develop new therapies and to
identify patients most likely to respond to targeted therapies.
Importantly, the results may help the field to refine our current
classification of TBI as mild, moderate, or severe.
Using a novel approach, the investigators combined data
from two independent, multicenter studies, the TRACK-TBI
Pilot study and the COBRIT investigation to demonstrate that
the previously reported observation regarding the ANKK1
gene was generalized in a larger and more diverse TBI patient
population. By combining data, they
saved millions of dollars and at least
three years of duplicative research
to verify the original findings. As
well, this is the first study to use the
National Institutes of Neurological
Disorders and Stroke (NINDS) TBI
Common Data Elements to harmonize data across studies
and to use the combined dataset to test new hypotheses.
Finally, by including investigators from the TRACK-TBI and
COBRIT study teams, as well as others in the research and
publication, they demonstrated the value of team science in
expanding our TBI knowledge base. This impressive research
is just the beginning of future collaborative efforts that the
teams will be embarking on in 2015, and that One Mind will
continue to support in the future.
“The impact of providing patient stipends and
transportation costs for follow-up patient visits
has been significant. TRACK-TBI researchers are
reporting an impressive 80% overall return rate.”
- Pete Chiarelli, CEO of One Mind, General, U.S. Army (Retired)
6
CONCUSSION SCREENING AND
INFORMATION (CSI) PROJECT
Taking a Page Out of the Military’s and NFL’s Concussion Care Playbook
In 2009, former Vice Chief of Staff of the U.S. Army, General Peter Chiarelli (Ret.), led the Department of Defense (DoD)
efforts on the “invisible wounds of war” – traumatic brain injury (TBI), post-traumatic stress (PTS), and suicide prevention.
He championed a battlefield-to-bed side protocol to identify service members with suspected brain trauma and
provide expert medical care. The National Football League (NFL) has also convened experts to address concerns about
sports-related concussions. These experts have developed best practice protocols to ensure appropriate screening,
identification, and follow-up for players on the field who sustain a concussion or TBI. Both organizations use these
expert-consensus guidelines to make return-to-play or duty decisions.
It is time to turn our attention to the “fight
at home,” to bring expert concussion
screening and patient discharge
information to the more than 2.5 million
Americans who go to emergency or urgent
care centers every year. Children and adults
who play sports, ride bicycles and engage
in other recreational activities, or who fall
or have accidents resulting in brain trauma,
should all receive the benefits afforded to
NFL players and service members.
“Use of a standard concussion screening form and patient
discharge instructions in emergency care centers throughout
the U.S. will hasten recovery and minimize complications for
the millions of people who sustain traumatic brain injuries.”
- Dr. Ramona Hicks, Chief Scientific Officer, One Mind
However, emergency care centers face unique challenges because of the life-threatening injuries many of the patients
endure, and the wide range of financial, social and family support available to them after discharge. A concussion
screening form suitable for emergency care centers needs to be short, relevant to decision making, and ideally
integrated into electronic health systems. The patient discharge information
needs to provide practical, helpful guidelines on what to expect and
how to manage symptoms based on best available evidence.
In order to facilitate adoption of standardized concussion
screening and discharge information throughout the U.S., One
Mind, in collaboration with the Center for Disease Control (CDC),
DoD, NFL, National Institutes of Health (NIH), Defense and Veterans
Brain Injury Center (DVBIC), General Electric and clinical experts, are
adapting the military and NFL screening tools to make them relevant and easy to implement in emergency care centers.
These forms will be evaluated in a few of the TRACK-TBI centers to evaluate their performance within the next few
months. This will be followed by a coordinated effort aimed at dissemination and implementation. Even while exciting
new research trials of better diagnostics and improved treatments for TBI are ongoing, widespread adoption of these
screening tools and information sheets has the potential to promote recovery now.
TBI is an equal opportunity health condition. Let’s help to ensure that everyone suspected to have a concussion is
properly screened so they can be informed about their condition and followed over time, and the concussion does not
evolve into a life-altering event.
ONE MIND | onemind.org
7
DEVELOPMENT
If you or someone you know is interested in supporting One Mind, please contact Sharon London,
Director of Development, at [email protected] or 206-946-1769.
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:
Email:
_________________________________ ________– ________– ________– ________
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 98122
Thank you for your support!
If you have questions about your gift, please contact Sharon London, Director of
Development, at [email protected] or call 206-946-1769.
8