The CCRC conducts a comprehensive multidisciplinary research program focused solely on Chiari malformation and syringomyelia. This research is within three domains, 1) Clinical, 2) Life sciences, and 3) Engineering (see figure).
Each of these domains have focus areas such as the Chiari patient database, advanced MRI imaging, and biomechanics. Multiple specific research projects are conducted within each area.
Research Goals & Objectives:
The CCRC research program is aligned with the four primary goals set forth by the C&S Patient Education and Research Foundation.
These goals are reviewed on an ongoing basis with CCRC staff and the Conquer Chiari scientific advisory board and modified according to current research findings. The most up-to-date research goals can be accessed via Conquer Chiari.org.
- 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
- 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)
- 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
- 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