Conquer Chiari - Research Agenda

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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.

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

Disclaimer: This publication is intended for informational purposes only and may or may not apply to you. The editor and publisher are not doctors and are not engaged in providing medical advice. Always consult a qualified professional for medical care. This publication does not endorse any doctors, procedures, or products.