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Spinal Cord Injury Update

Winter 2008: Volume 17, Number 1

 

Experimental treatment for SCI: Watch out!

Image of scientist in lab looking into a microscope with images of nerve cells in the background.

Many people with SCI read about experimental treatments (for the spinal cord injury itself, or for its consequences such as chronic pain or problems in sexual functioning) and wonder why they are not being offered in the U.S. They may ask themselves whether they should consider traveling to distant places—usually at their own expense—for a chance to be cured. Sometimes these “innovative” treatments are offered as part of research, sometimes not even that.

Professionals who follow SCI treatment research at times have grave concerns about the safety of some of this research, especially some of the foreign trials. To help patients understand the maze of SCI research and make informed decisions about treatments, the International Campaign for Cures of Spinal Cord Injury Paralysis (ICCP) published a free 2007 booklet called Experimental Treatments for SCI: What you should know if you are considering participation in a clinical trial. A guide for people with SCI, their families, friends and caregivers (www.icord.org/iccp.html).

The 40-page booklet provides guidelines and a checklist of questions to ask if you are considering a new treatment—any new treatment, but especially one that claims to offer radical improvements. It clearly explains what a clinical trial is and why it is difficult to know whether a treatment is really beneficial if there has not been a clinical trial. The booklet also describes the status of several experimental treatments currently being studied or used around the world.

For more information:

International Collaboration on Repair Discoveries (ICORD), www.icord.org— research and training to accelerate the discovery of more effective strategies to promote functional recovery after SCI, located in Vancouver, B.C.
International Campaign for Cures of Spinal Cord Injury Paralysis (ICCP), www.campaignforcure.org— an international coalition of non-profit organizations whose mission is to expedite the discovery of cures for spinal cord injury paralysis.

People desperate for a cure are vulnerable to untested, unproven procedures. They owe it to themselves to become fully informed about the procedure and all the possible risks and outcomes of a treatment before deciding whether to participate. There is always a chance that an intervention (treatment) might make your condition worse rather than improve it. Only you can decide whether the risk is worth it.

Some issues you should consider before consenting to an experimental treatment: