There are clinics "selling snake oil" all over the world, warns Sean Morrison, a stem cell expert at the University of Michigan.
The International Society for Stem Cell Research says it's concerned about aggressive marketing of treatments by clinics that may not have safeguards to ensure safety or likely benefit.
In June, the society launched a website - www.closerlookatstemcells.org - for people interested in such clinics. It has already attracted more than 10,000 hits.
The website offers background information on stem cell research and suggests questions to ask at a particular clinic, such as:
• What is the scientific evidence that this new procedure could work for my disease or condition? Where is this published?
• Is there any independent oversight or accreditation of the clinic where the treatment will be done and the facility where the cells are processed?
• What are the risks of the procedure and the possible side effects, both immediate and long-term?
The website also invites readers to submit the names of clinics, which the society will then contact for specific information as it builds a public list of facilities.
The list will reveal whether these clinics provided evidence of appropriate oversight and patient protections.
At a U.S. government website - www.clinicaltrials.gov - patients and families can search for formal treatment studies all over the world that are aimed at particular diseases.
The website's database currently details more than 90,000 clinical trials sponsored by federal agencies (such as the National Institutes of Health) and private industry.
Top 10 Things to Know About Stem Cell Treatments
Adapted from the International Society for Stem Cell Research:
1. There are different types of stem cells, each with their own purpose.
It is unlikely that a single cell type could be used to treat a multitude of unrelated diseases that involve different tissues or organs. Be wary of clinics that offer treatments with stem cells that originate from a part of the body that is different from the part being treated.
2. A single stem cell treatment will not work on a multitude of unrelated diseases or conditions.
A major warning sign that a clinic may not be credible is when treatments are offered for a wide variety of conditions but rely on a single cell type.
3. Currently, there are very few widely-accepted stem cell therapies.
The range of diseases where stem cell treatments have been shown to be beneficial in responsibly conducted clinical trials is still extremely restricted (including diseases and conditions of the blood and immune system; restoring the blood system after treatments for specific cancers; some bone, skin and corneal diseases or injuries).
4. Just because people say stem cells helped them doesn't mean they did.
Be wary of clinics that measure or advertise their results primarily through patient testimonials, which may by unrelated to the actual stem cell treatment, arising from the "placebo effect," accompanying treatments, and natural fluctuations of the disease or condition.
5. A large part of why it takes time to develop new therapies is that science itself is a long and difficult process.
If a treatment has not been carefully designed, well studied and gone through the necessary preclinical and clinical testing, it is unlikely to have the desired effect. Even more concerning is that it may prove to make the condition worse or have dangerous side effects.
6. To be used in treatments, stem cells will have to be instructed to behave in specific ways.
Bone marrow transplantation is typically successful because we are asking the cells to do exactly what they were designed to do: make more blood. For other conditions, we may want the cells to behave in ways that are different from how they would ordinarily work in the body. Be wary of claims that stem cells will somehow just know where to go and what to do to treat a specific condition.
7. Just because stem cells came from your body doesn't mean they are safe.
While you are unlikely to have an immune response to your own cells, the procedures used to acquire, grow and deliver them are potentially risky. As soon as the cells leave your body they may be subjected to a number of manipulations that could change the characteristics of the cells, or contamination with bacteria, viruses or other pathogens. The procedure to either remove or inject the cells also carries risk.
8. There is something to lose by trying an unproven treatment.
It is easy to understand why people might feel they have nothing to lose from trying something even if it is unproven. However, there are very real risks of developing complications, both immediate and long-term, while the chance of experiencing a benefit is likely very low. Participating in an unproven treatment may also make a person ineligible to participate in upcoming clinical trials.
9. An experimental treatment offered for sale is not the same as a clinical trial.
The fact that a procedure is experimental does not automatically mean that it is part of a research study or clinical trial, using tested pretrial data and independent oversight by a medical group or ethics committee. Beware of expensive treatments that have not passed successfully through clinical trials.
10. Stem cell science is constantly moving forward.
Although it is sometimes hard to see, stem cell science is moving forward. There have been great advances in treating diseases and conditions of the blood system using blood-forming stem cells, and these show us just how powerful stem cell therapies can be.