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Conquer Chiari has an
active program of awarding Research Grants and organizing Conferences in
support of the Goals and Objectives identified in our Research Agenda.
Research Grants:
Ongoing, Completed
Research Conferences
Conquer Chiari Research Agenda
The Importance of Research
Ongoing Research Funded By Conquer Chiari -
Total Active Research
Projects = $ 382,600
Total Completed Research
= $ 50,000
Total Research Funded To Date = $ 432,600
Dynamic MRI and Quantitative MR CSF Flow Studies in Chiari I Malformations
A $50,000 research grant to the University of Michigan (Dr. Bapuraj) to
study the effect of neck position on tonsillar crowding and CSF flow in
children with Chiari. While many people believe that neck flexion and
especially extension negatively impacts Chiari, this study will determine
whether this is true and provide quantitative data, which may be valuable in
evaluating patients with mild or sporadic symptoms.
MR
Measurement of CSF Wave Speed, Distribution of CSF Velocity and Pressure,
Longitudinal
Impedance, and Skull Base Geometry in Chiari Patients
A $120,000 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.
Molecular Neural Crest-mesoderm
Interactions and Control Networks Affected in Chiari (Phase II)
A $75,000 grant to extend the work of
Dr. Koentges in identifying the regulatory regions (CRM) directing the gene
expressions in the development of the cranial base and neck regions. The
research will use advanced genomic analysis techniques to identify key CRMs
in the neural crest components of the skull and neck regions as related to
key, unique clinical features of Chiari. Establishing the full host of cis-regulatory
regions potentially implicated in Chiari will assist clinicians and human
geneticists in resolving the varied symptoms associated with the syndrome
and create unique profiles that may be predictive of diagnosis and treatment
outcomes as part of a comprehensive re-classification based on genetic
grounds.
Cognitive Function in Chiari
Malformation
A $75,000 grant to Dr. David Frim,
at the University of Chicago, to address one of the most pressing questions
Chiari patients have: Does Chiari affect thinking, memory, and
concentration? Dr. Frim will employ techniques developed in studying
hydrocephalus to evaluate the cognitive impact of Chiari on both pediatric
and adult patients. If a cognitive profile associated with Chiari is
identified, it can then be used to develop therapeutic interventions to
lessen the cognitive impact of Chiari and improve outcomes.
Characterization of Chiari Clinical
Subtypes by Expression Analysis
A $54,000 grant to Dr. Simon Gregory,
a geneticist at Duke University, to perform genetic analysis on pediatric
Chiari patients undergoing surgery, in order to identify clinical
sub-groups. Dr. Gregory will examine blood and tissue samples from the
patients and correlate the genetic expression(s) with clinical indicators,
such as skull dimensions and the presence of a syrinx. The Conquer Chiari
Research Conference in 2008 highlighted the identification of specific
sub-groups of Chiari patients as critical to improving treatments and
outcomes, especially in children.
Chiari Symptom Profile
A $3,000 grant to Dr. Diane Mueller of the University of Missouri to
develop a statistically validated measure of Chiari symptoms. Such a
tool will be vital in advancing the clinical care of Chiari and enabling
more scientifically sound research. Note: Since Dr. Mueller is
on the Board of Directors of Conquer Chiari, she is not personally taking
any funds associated with this project, but rather is volunteering her time
and expertise to oversee it.
Prospective Evaluation of Release of Tethered Spinal Cord in Patients with
Chiari I Malformation, Syringomyelia, or Scoliosis
A two-year clinical grant to Dr. John
Oro, at the Chiari Care Center, to study the effects of tethered cord
release surgery in patients with clinical signs and symptoms of tethered
cord and Chiari and/or syringomyelia. The relationship between tethered
cord and Chiari is controversial as is the treatment of patients with
indications of both. This well structured, prospective research study
should provide insight into the connection between tethered cord and Chiari
and how best to treat such patients.
Completed Research
Microarray-based discovery of genes active in post-otic neural crest at
critical stages and places of head morphogenesis affected in Chiari I/ II
(Phase 1)
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 are believed to correspond to when the
defects associated with Chiari occur. According to Dr. Koentges, “As a
direct results of this grant, our investigations into PONC cells has lead to
the establishment of the molecular development of the tissues implicated in
the variety of symptoms of Chiari.”
RESEARCH CONFERENCES
Chiari Malformation:
State of the Research & New Directions (November 2008):
A two day professional research
conference, sponsored by the National Institute of Neurological Disorders
and Stroke (NINDS), which brought 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 presentations breakout working group
sessions on: Definition & Pathophysiology, Symptoms & Diagnostic
Criteria, Engineering & Imaging Techniques, Treatment, Pediatric Issues, and
Related Conditions.
A video web archive of the
presentations is available for viewing here:
Chiari Conference 2008
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.
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
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,
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. |