Research​

Cauda Equina Foundation, Inc. focuses on research to reach our vision to eradicate the effects of neurological devastation resulting from cauda equina syndrome. Research on cauda equina syndrome allows us to make recommendations for diagnosis and treatment of both acute and chronic cauda equina syndrome, develop education programs for healthcare providers and patients, and improve the quality of life and care for individuals living with cauda equina syndrome. We conduct in-house research as well as provide grants and financial support to other researchers for cauda equina syndrome.

Current Research Trials

Post-Surgical Cauda Equina Syndrome Patient Outcomes Survey 

 

Dr.  Nisaharan Srikandarajah is working with a team of researchers to study post-surgical outcomes of patients with cauda equina syndrome. This is a series of patient surveys to help researchers better understand the effects of cauda equina syndrome. Initial study participation has closed. For those of you that participated, thank you for helping us work our way to CES progress! Please be sure to check your email to see if you were selected to attend the consensus meeting in Liverpool, UK on November 9, 2018. If selected and you are able to attend, please follow the directions on reimbursement of travel and reservations of attendance. 

 

 

 

IRAS: 235208 Version: 1.0 Date: 01/02/18

 

 

 

 

 

Dear participant,

 

Cauda equina syndrome (CES) is in most cases caused by sudden compression of the nerves coming off the end of the spinal cord (cauda equina). It is the most common emergency spine operation in adults.

 

We are undertaking a novel study to find out what the most important challenges and outcomes are faced by patients who have Cauda Equina Syndrome.  

 

We have realised through a review of the literature and conducting one to one patient interviews there are a lot of issues mentioned relating to CES. However, none have been prioritised by patients and healthcare professionals together as important.

 

You have been invited as you are either a patient with the condition or a healthcare professional (consultant or board certified equivalent) that manages patients with CES so you are in an ideal position to advise us what the most important outcomes are.

 

The Delphi survey involves 2 rounds of a questionnaire that you can complete where you prioritise the outcomes listed. After each round, you will receive feedback of the anonymised group responses and asked if you would like to change your previous scores.

 

If you complete all rounds of the questionnaire you may be invited to participate in a consensus meeting in Liverpool, UK. This will be a full day meeting where healthcare professionals and patients meet to discuss the results of the Delphi process and what to finally include in the core outcome set.

If you would like to be involved please visit this website; http://bit.ly/cesdelphi . A direct link to the Delphi survey is available on the website. If you would like further information regarding the study please refer to the participant information sheet available on the website or you can contact a member of the research team at any time by email (nishsri@liverpool.ac.uk). If you choose not to take part in the study it will not affect your medical care.

 

 

Once again, thank you for your time and we do hope you consider taking part in this novel study.

 

Kind regards,

 

 

 

 

Mr Martin Wilby                     Mr Simon Clark                   Mr Nisaharan Srikandarajah

(Consultant Neurosurgeon) (Consultant Neurosurgeon) (Neurosurgical registrar)

Cauda Equina Syndrome An Independent Study 2018

 © 2020 Cauda Equina Foundation

P.O. Box 381

Howey in the Hills, FL 34737