Research Project

Ann Conroy Trust

Support Education and Research

For those living with

Chiari Malformation, Syringomyelia and associated conditions

Ehlers-Danlos Syndrome or Hypermobility Spectrum Disorder Research Project

 

This project is being run by Mr Andrew Brodbelt, Consultant Neurosurgeon, Mr Mark Radon, Consultant Neuroradiologist, and Mr Harry Sharples, Medical Student, The Walton Centre NHS Foundation Trust, Liverpool.


We would be grateful if you would consider filling in the questionnaire, by accessing the link below.  It is for people who live in the UK, have Ehlers-Danlos (EDS) or Hypermobility Spectrum Disorder (HSD) (who do or do not have Chiari malformation and/or syringomyelia) and have had surgery outside the UK for their EDS/HSD.


This short questionnaire will only take a few minutes of your time, but long term, could benefit people from the UK, who have spinal or cranial conditions related to EDS or HSD. 


The questionnaire aims to try to obtain data on the extent of the problem and to see if you have been helped with your condition. 


Your data will be fully anonymised.  By completing the questionnaire, you agree to the data submitted being used for future publications and presentations.  


The completion date for data collection and filling in the questionnaire is 19th July 2020, but we would encourage anyone considering filling it in, to complete it as soon as possible.


Link: 


https://docs.google.com/forms/d/e/1FAIpQLSekS4UGRRbcUQBKFqwDMpa6M3DA2WfU9pb7jsaEAetUyVcTng/viewform?usp=sf_link

Ann Conroy Trust CIO

registered in England number 1165808