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National Institutes of Health Chiari Research Conference: state of the research and new directions.
MedLine Citation:
PMID:  21513642     Owner:  NLM     Status:  In-Data-Review    
METHODS: Chiari malformation: state of the research and new directions was a two-day, National Institutes of Health sponsored conference. The agenda included review presentations and working groups tasked with developing specific, achievable research recommendations. Content for both the review presentations and working groups was divided into six areas: pathophysiology, symptoms and diagnosis, engineering and imaging analysis, treatment, pediatric issues, and related conditions.
RESULTS: The articles in this issue represent the knowledge base that was developed at the conference, plus subsequent literature reviews. There are significant gaps in the understanding of Chiari malformation, including a clinically relevant definition of Chiari, confusing terminology, subjective diagnostic criteria, and a well-accepted standard of care. These knowledge gaps are not surprising given the relative lack of Chiari research compared to similar neurological conditions and the preponderance of case reports in the published Chiari literature. The lack of understanding, and research, regarding Chiari translates directly into negative patient experiences and outcomes.
CONCLUSIONS: Implementation of the recommendations developed at the conference would not only further expand the current understanding of the condition, but would likely have a significant, positive impact on patient experiences and outcomes.
Rick Labuda; Francis Loth; Konstantin Slavin
Publication Detail:
Type:  Journal Article    
Journal Detail:
Title:  Neurological research     Volume:  33     ISSN:  1743-1328     ISO Abbreviation:  Neurol. Res.     Publication Date:  2011 Apr 
Date Detail:
Created Date:  2011-04-25     Completed Date:  -     Revised Date:  -    
Medline Journal Info:
Nlm Unique ID:  7905298     Medline TA:  Neurol Res     Country:  England    
Other Details:
Languages:  eng     Pagination:  227-31     Citation Subset:  IM    
C&S Patient Education Foundation, Wexford, PA, USA, USA.
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