Pediatric Chiari Research

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Research

Conquer Chiari has an active research program which encompasses both research grants and professional research conferences. While many research studies apply to all patients regardless of age, in 2009, as part of our Conquer Pediatric Chiari effort, we launched a program aimed specifically at pediatric research and began to focus certain research funds on pediatric studies.

Conquer Chiari Research Conferences
Conquer Chiari Research Agenda

Conquer Chiari Research Grants:

Total Active Research Projects = $ 382,600
Total Completed Research = $ 50,000
Total Research Funded To Date = $ 432,600

Pediatric Research Funded By Conquer Chiari

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.

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.

General 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
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.

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.

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.

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) - Completed
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.”