This is precisely what we need for stroke, because if we can't even competently and accurately describe the problems we will never be able to solve them. I don't expect either the the NSA, ASA or WSO to take on this challenging task because that would entail hard work. Prove me wrong!
http://www.ninds.nih.gov/research/tbi/intl_CDE_project.htm
The
brain is the most complex organ of the body and repairing it after
injury is challenging. To address this challenge, research
scientists are working to increase our
understanding of brain function and to develop better diagnostic tools
and treatments
for the millions of people worldwide
living with traumatic brain injury (TBI). The National Institute of
Neurological Disorders
and Stroke (NINDS) is the lead institute
at the National Institutes of Health (NIH) for TBI research and supports
a range
of high quality research on this topic.
Understanding
reasons for good and poor recoveries after TBI is an important step
toward developing better treatments, and
several years ago NINDS supported a study
to address this question. The study was unusual in that it evaluated
thousands of
cases of severe TBI by combining data
retrospectively from several clinical trials. Such large data sets were
previously unavailable,
and the study successfully identified
several major factors associated with recovery. However, some research
questions could
not be fully addressed because the
original studies did not include the data needed to answer them. It
became clear that many
important questions about recovery after
TBI would need to be addressed in new studies. Moreover, investigators
also discovered
that retrospectively comparing data from
multiple studies was excruciatingly difficult and time consuming because
the same
types of information were coded in
different ways. For example, some studies reported a subject’s
educational status as “none,
grade school, high school, college, or
graduate school” while other studies reported “total years of school.”
Hundreds of
these types of examples existed, and
investigators spent years figuring out ways to make the studies
comparable and then reformatting
the data. There had to be a better way to
combine information from multiple studies!
The better way is the International TBI Common Data Elements Project,
a collaboration among the NIH, Department of Defense (DOD), National
Institute on Disability and Rehabilitation Research,
Department of Veterans Affairs, and
Centers for Disease Control and Prevention to standardize definitions
and protocols for
TBI research. Rather than retrospectively
reformatting and harmonizing data after a study ends, the goal of the
International
TBI Common Data Elements Project is to
standardize data collection at the beginning. The project includes
hundreds of scientific
experts from around the world who serve on
working groups and steering committees to develop recommendations for
collecting
data in a uniform manner. The standardized
data recommendations are referred to as common data elements (CDEs).
Currently, more than 900 CDEs for TBI research (Hicks et al., 2013) exist, and are available on multiple websites, including
the NINDS Common Data Elements
website. A small number of the CDEs are so commonly used that they are
called “CORE CDEs” and recommended for use in virtually
all TBI research studies. Other CDEs are
recommended for use depending on the type of study, such as
epidemiology, acute-hospital,
rehabilitation, or mild TBI/concussion.
Some of the CDEs are relevant to subjects of all ages, and others are
specific to
children or adults.
Following
the development of the TBI CDEs, the next major step was to try them
out to see if they could actually work in a
research study conducted across multiple
centers on a wide range of subjects. To give them a test-run, four TBI
hospitals
collaborated to collect data on more than
650 subjects with TBI, with injuries ranging from mild to severe, in a
study called
TRACK-TBI. The TRACK-TBI study revealed
that the TBI CDEs had a few minor issues, but overall they were useable.
In addition,
the CDEs accelerated the research as the
data were collected in just two years. Most of the data are still being
analyzed;
one early publication demonstrated that an
MRI of the brain was more predictive of recovery outcomes at 3 months
than a conventional
CT scan (Yuh et al., 2013). Although
previous smaller studies had shown similar findings, the large number of
subjects in
the TRACK-TBI study greatly increased the
clinical significance and impact.
Lastly, there is the question of how to put the TBI CDEs into practice. It’s one thing to develop CDEs and another thing to actually use them. Fortunately, there are two major activities underway to promote the use of the TBI CDEs and data sharing. One is the
NIH and DOD collaboration to provide a Federal Interagency TBI Research (FITBIR) Informatics System.
FITBIR provides a database for TBI research at no cost to the research
scientists, as well as an electronic data capture
tool, and a platform for collaboration and
data sharing. FITBIR uses the TBI CDEs for its data dictionary. The
second major
activity is the International TBI Research
(InTBIR) Initiative (Tosetti et al., 2013). InTBIR is a collaboration
among the
NIH, European Union Research Directorate
and Canadian Institutes of Health Research to support international team
science
to study 10,000 children and adults with
TBI. InTBIR researchers will use the TBI CDEs in their studies to
facilitate data
sharing and analysis toward the
development of better diagnostic tools and more effective treatments.
In
summary, the International TBI Common Data Elements Project built a
foundation for the FITBIR Informatics System and the
InTBIR Initiative, and together all of
these projects will help us to get further, faster on understanding TBI
and identifying
ways to promote recovery.
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