CSF International Patient Registry Project (Ongoing)
Chiari malformation (CM), syringomyelia (SM) and related disorders (RD) affect millions of people worldwide. Starting on the path to improved care can be a daunting task. An important early step is to establish a national patient registry, an invaluable tool for improving the lives of people with CM/SM/RD.
The number of investigators conducting numerical and experimental simulations to better understand the dynamics of cerebrospinal fluid (CSF) has continued to increase since the 1st International CSF Dynamics Symposium held in Zurich, Switzerland. Building on this momentum, we held the 2nd International CSF Dynamics Symposium to continue exchange of ideas toward modeling of CSF.
CSF Funded Grants
Upon scientific review by experts from the CSF Scientific Education & Advisory Board, CSF is pleased to fund the following grants which were submitted for review in response to our 2012-2013 Request for Proposals:
CSF has also funded a Chiari Fellowship at the Duke Center for Human Genetics.
CSF Ehlers-Danlos Syndrome Colloquium (2011)
CSF sponsored the Ehlers-Danlos Syndrom Colloquium which was held on October 1-2, 2011 at the Cosmos Club in Washington DC. Video of the Colloqium can be seen by clicking the link above.
Project to Analyze the Prevalence of Chiari Malformation Within the ASD Population
There appears to be an underserved population of children and adults with Chiari malformation and autism – the size of which is yet to be determined. Recent data suggests that a greater than expected overlap of findings in children diagnosed with Chiari Malformation and those diagnosed with Autism Spectrum of Disease (ASD).
1st CSF Hydrodynamics Symposium
On July 8 and 9, 2011, CSF proudly sponsored the first CSF Hydrodynamics Symposium in Zurich, Switzerland, thanks to a very generous grant from the Monkton Institute and Ms. Candida Lancaster .
Conquer Chiari Research Conference: New Developments & Controversies
CSF sponsored this two-day professional research conference on November 11 and 12, 2010 in Chicago, Illinois, which focused on new developments in Chiari research and controversies in diagnosis and care. The event brought together the top physicians and researchers involved with Chiari malformation to share recent developments, discuss and debate controversial topics, and foster collaboration for future work. The proceedings will be made freely available to the Chiari community through a video web archive.