TREAT-NMD is aware that new scientific discoveries and innovations can lead to raised expectations and enthusiasm and this may in turn lead to hype, which can be seen as increased publicity and unfounded claims. To help inform patients and the public, TREAT-NMD has put together a resource guide to give both patients and researchers guidance on stem cell research, stem cell tourism and cord blood banking. With the ever-increasing media attention that stem cells have received over the years, it is no wonder that people may get confused about what is actually safe and scientifically valid and what is not.
There have been some promising results in animals using stem cells for neuromuscular disorders (NMDs), however there have not yet been any clinical trials in humans. It will probably be a long time yet until the work on stem cells currently ongoing in the lab can be translated into reality for NMDs in the clinic.
Stem Cell Tourism
In recent years, “stem cell tourism” has become more and more popular with people who have NMDs. Unregulated clinics all over the world are charging substantial amounts of money for stem cell “therapies”, which have not been shown to be effective, or most importantly safe. These clinics advertise their “treatments” on their websites without giving any scientific evidence to back up their claims, with only anecdotal evidence of their limited successes. Therefore, there is great concern from scientists that public confidence in their work could be undermined by these unregulated clinics selling bogus treatments.
Private Cord Blood Banking
A number of private organisations offer to store umbilical cord blood which they claim may be useful to the child or familiy members in the future, should stem cell therapies be developed for certain diseases. They charge a considerable amount of money for the service when there is no clear evidence that the stored cord blood will ever be of use for therapy development or treatment.
Click on the links to the left to find out more.