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November 30th, 2009 --
I hope everyone enjoyed their Thanksgiving holiday and were able to forget
about Chiari for awhile.
While I certainly did enjoy myself, in the back of my mind something kept
nagging at me the whole time. Specifically, I knew that when I got
back to work, I would have to publish a newsletter, this one, with very
little content. I have been working on Chiari & Syringomyelia News
since 2003, and unfortunately, while progress has been made on many fronts
in the battle against Chiari, there are still long stretches of time where
there is very little published research of interest.
The past few months have been one of those times. This newsletter
contains only two research updates. Fortunately, they are both pretty
interesting and represent good work in the medical/research community, but
there is no getting around the fact that in terms of quantity, published
Chiari research lags behind other diseases that affect about the same number
of people. I've discussed before possible reasons for this
(neurosurgeons are too busy to do research, no pharmaceutical solution) and
won't belabor the point, but it is an area that we need to continue working
on.
On the positive side, as Conquer Chiari continues to grow - thanks to your
hard work - we will be able to have more and more of a direct impact on the
research community. Based on the success of this year's fundraisers,
it is our intent to fund $250,000 worth of research grants in 2010. Of
course, this is on top of the studies we funded earlier this year which will
still be ongoing. As we are able to focus more funds on research, we
will in turn be able to increase the pace of research publications. In
addition, we have begun organizing our next professional research conference
which will be held in November, 2010.
In fact, as I think forward to the projects we will be funding over the next
2-3 years, I feel good about the progress we are making on our research
agenda. Although the road is long, we are definitely underway.
If you are not familiar with the Conquer Chiari Research Agenda, here it is:
Goal #1: Reduce the average time to an accurate diagnosis to less than 2
years from time of first symptoms.
· Develop a standard, simple, objective definition and test of symptomatic
Chiari
· Enable the introduction of new technologies, such as inexpensive, portable
imaging, which will reduce the barriers to diagnosis
Goal #2: Develop an effective, widely adopted, and minimally traumatic
standard of care.
· Design, and encourage the adoption of, a standard outcome measure, such
that the results from different studies can be compared and combined
· Establish whether the surgical variations that currently exist have a
significant effect on long-term patient outcomes, and further develop a
standardized surgical approach
· Encourage the development of minimally invasive surgical techniques
· Pursue non-surgical treatment approaches which don't just address
symptoms, but are targeted at the core problem(s)
Goal #3: Minimize the impact that Chiari has on the quality of life of
patients.
· Develop, and encourage the adoption of, a Chiari Impact Measure, which
takes into account patient focused issues such as career, family, economics,
recreation, and socialization
· Understand, and develop treatments for, the neuropsychological effects of
Chiari, including both cognitive and emotional manifestations
· Develop widely accepted protocols for physical, occupational, and other
types of therapies designed to maximize functional capabilities
· Enable the development of innovative technologies and treatments targeted
at the neuropathic pain and loss of function associated with Chiari
Goal #4: Understand the pathophysiology, natural history, and
epidemiological characteristics of Chiari.
· Establish, with reasonable accuracy, the incidence and prevalence of
Chiari and Chiari related syringomyelia
· Characterize, and quantify, the Chiari experience, such as average age of
diagnosis, time to diagnosis, number of doctors seen, major symptoms, etc.
· Develop a sound theoretical model for the pathophsyiology of Chiari, which
explains how symptoms develop, and will enable predictions about who needs
surgery, who will develop syringomyelia, etc.
· Identify and characterize the genetic basis of Chiari
-- Rick Labuda
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