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WSTFCURE.org
WORLDWIDE SYRINGOMYELIA & CHIARI TASK FORCE INC.

​ WSCTF SYRINGOMYELIA AND CHIARI WORLDWIDE REGISTRY!

We would like to thank NORD  for selecting our organization to collaborate on the First Official Natural History Study and development of our WSCTF Syringomyelia & Chiari Worldwide Registry!  The  award provided  WSCTF the opportunity to establish our own worldwide disease specific registry that we plan to build upon for many years to come!    Syringomyelia and Chiari Malformation are complex.  Currently there are numerous disparities across multiple disciplines with regard to treatment and understanding of Syringomyelia and Chiari Malformation in direct patient care.  Our nurses and physicians are working together to identify and address those disparities.  We use a patient-centered approach at the forefront of all we do at WSCTF. 

Traditionally registries have been launched to focus on a specific disease or condition.  Successful registries adhere to strict standards and can provide healthcare professionals and researchers  information to increase understanding of the disease or disorder and its complications.  WSCTF is committed to the success of our innovative disease specific registry.  We hope that our disease specific registry will open doors to more disease specific medical publications, education and research, increase understanding across all medical disciplines, decrease patient complications, and improve the quality of life for all living with Syringomyelia and Chiari Malformation!  

Our registry content goes through a strict IRB approval process.   IRB is a term that stands for Institutional Review Board.    If you would like more information about Institutional Review Boards in general as well as their purpose with regard to registry development please take time to visit the US Department of Health and Human Services website:  www.hhs.gov.   In addition if you would like you can 
click here to subscribe for updates regarding the official date of our registry launch and sign up for our newsletter.  The NORD FAQ page contains useful information that can serve as a helpful resource for anyone wanting to learn more about the registry program.  

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Content of this Website is Reviewed and Approved by our Medical Advisory Board
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Date of Last Review and Updated:
1/2/19

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Please note:  All WSCTF educational materials are reviewed and approved by our
Medical Advisory Board.  The information provided on this website is meant to complement and not replace any advice or information from a healthcare professional.

​Please be advised that this website does not accept or host any advertising.

Educational sessions are taught by registered nurses and physicians. 
The authors of this website are medical professionals.  The information on this website does not substitute for medical care.  Information on these pages is based on biomedical research, published by peer-reviewed journals, and international research conferences.  Additionally, in some cases anecdotal information is provided by subscribers to a mailing list and/or members of the Worldwide Syringomyelia & Chiari Task Force organization.  A listing of Syringomyelia & Chiari research is available.