The Endparalysis Foundation recently participated in a global scientific conference regarding spinal cord injury (SCI). The International Spinal Cord Society (ISCOS) annual scientific meeting took place in Maastricht, Netherlands, September 2-4th, 2014.
Corinne Jeanmaire, founder of The Endparalysis Foundation, had the opportunity to introduce the foundation during an ISCOS consumer workshop. She also participated in various workshops focussing on clinical trials, research and treatments for spinal cord injury.
SCI clinical trials
One of the main discussion points to emerge from the conference was regarding clinical trials: How can SCI patients be encouraged to enroll in clinical trials? We, at the Endparalysis Foundation, think and stated as follows:
– When the newly injured inquire about the possibility of a cure for paralysis, a majority are told that they should accept the permanence of their paralysis and should not hope for any kind of recovery because “there is nothing happening in research”.
– Whilst we agree on the need for acceptance, we think that clinicians should not deny the current progress of spinal cord injury research. There is no cure. That is a fact which should be clearly stated, but this does not preclude any future development towards at least some level of recovery.
– We oppose unproven, profit-driven, ineffective and sometimes dangerous therapies which are currently available for sale globally. To prevent people from partaking in what is described as ‘stem cell tourism’ and to encourage participation in legitimate clinical trials, patient education must begin prior to hospital discharge. Patients should be informed by clinicians about current research trends in regenerative medicine enabling them to educate themselves, manage their expectations and possibly participate in legitimate clinical trials.