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Conquer Chiari has an active
research program which involves both research grants and conferences.
Chiari Malformation:
State of the Research & New Directions:
A two day professional research
conference, sponsored by the National Institute of Neurological Disorders
and Stroke (NINDS), which will bring together the top physicians and
researchers in the field in order to establish the current state of
knowledge regarding Chiari malformation, discuss recent developments in
Chiari research, and develop research recommendations to advance the state
of knowledge and care for Chiari malformation. The meeting will include
review presentations, new research presentations, and breakout working group
sessions on: Definition & Pathophysiology, Symptoms & Diagnostic Criteria,
Engineering & Imaging Techniques, Treatment, Pediatric Issues, and Related
Conditions. All participants are invited to participate in the Working Group
Sessions.
Learn More &
Register
Ongoing Research Funded By
Conquer Chiari
MR Measurement of CSF Wave
Speed, Distribution of CSF Velocity and Pressure, Longitudinal
Impedance, and Skull Base Geometry in Chiari Patients
This is a $75,000 research grant to a collaboration of researchers to
look for new, objective indicators of symptomatic Chiari. Published research
has shown time and again that the old definition of Chiari, based on the
amount of tonsillar herniation below the foramen magnum, is not a good
indicator of symptom severity or the need for surgery. The overall aim
of this project is to identify novel methods of analysis that distinguish
symptomatic Chiari I patients who require treatment, from individuals with
asymptomatic Chiari I (incidental tonsial ectopia) using advanced imaging
and engineering techniques.
Microarray-based discovery of
genes active in post-otic neural crest at critical stages and places of head
morphogenesis affected in Chiari I/ II
A $50,000 research grant awarded to Dr. Georgy Koentges to employ a
mouse model to identify what genes are active at critical stages of
embryological development which he believes correspond to when the defects
associated with Chiari occur. This will in turn act as a stepping stone to
finding the specific gene or genes responsible for Chiari in people.
Dr. Koentges is a highly regarded researcher and his work has been published
on the cover of the prestigious journal, Nature.
UIC/Conquer Chiari Research
Symposium - 2007
The UIC/Conquer Chiari Research
Symposium was held on June 2nd at the University of Illinois-Chicago.
The event brought together top neurosurgeons and researchers from around the
world to present their work and exchange ideas. Each presentation was
recorded and is available via archived webcast (please note requirements
below):
Research Symposium 2007 Webcast
Note: There are two pages of presentations (19 total)
Requirements for viewing webcast:
> Microsoft® Windows 2000,
Windows XP,
Windows 2003
> Display resolution of 1024 x 768 pixels or greater
> Windows-compatible sound card
> Microsoft Internet Explorer 6.0 SP1 or greater
> Microsoft Windows Media® Player 9.0 or greater
> Broadband Internet connection (256 Kbps
and above)
If you don't have a broadband
connection, most (if not all) public libraries have broadband internet
access. Also note that some network systems will restrict access to
streaming video.
The Importance Of Research
While much can be accomplished
through education and awareness, medical and scientific advances are what
will be needed to truly improve the outcomes of patients and to Conquer
Chiari once and for all. Today, Chiari and syringomyelia are poorly
understood - from causes to symptoms to treatments - and patients pay the price
for this lack of knowledge. Imagine a world where Chiari is no big
deal....A Vision For The
Future
To make this vision a reality the
Chiari community needs to become more active in funding research. Each
research project costs a minimum of $50,000 per year, so organizing a
fundraiser is a great way to Join The Battle.
For ideas about fundraisers you
can organize, see: Fundraisers
Research Agenda
Conquer Chiari has developed, and
is actively promoting, the following Research Agenda:
Conquer Chiari Research Agenda: A Roadmap
For Success
Goal #1: Reduce the
average time to an accurate diagnosis to less than 2 years from time of
first symptoms.
Objectives:
·
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.
Objectives:
·
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.
Objectives:
·
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.
Objectives:
·
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
Support Research
Research is expensive. A single study is likely to cost between
$30,000 - $100,000. Unfortunately, the US government provides very
little funding for Chiari and syringomyelia research, so it is up to us,
those most affected by these diseases to fill the gap.
If you are interested in helping to fund exciting research which can change
people's lives, you may specify that your
donation be used for Research.
If you do this, 100% of your donation will be applied to Research.
Research Studies Actively Recruiting Participants
The C&S Patient Education Foundation is not involved in the studies listed
below in any way. The information is from the National Institutes of
Health which maintains a database of ongoing clinical research. The
links are intended for informational purposes only and may not be accurate
or complete. For more information, visit
www.nih.gov
Factors That Influence Chronic Pain Management & Treatment In CM/SM
Establishing the Pathophysiology of Primary Spinal Syringomyelia
Genetic Analysis of the Chiari I Malformation
Establishing the Physiology of Syringomyelia
Management
of Myelomeningocele Study (MOMS)
Manifestations of Heritable Disorders of Connective Tissue |