National Institutes of Health
ClinicalTrials.gov is a searchable database of clinical trials from around the world that are funded by public and private organizations. It’s a registry hosted by the USA-based National Institutes of Health (NIH) to provide doctors and their patients a resource to find appropriate studies for a variety of conditions. …
ClinicalTrials.gov is a searchable database of clinical trials from around the world that are funded by public and private organizations. It’s a registry hosted by the USA-based National Institutes of Health (NIH) to provide doctors and their patients a resource to find appropriate studies for a variety of conditions. A search on July 27th showed that there were over 1,400 stem cell clinical trials actively looking for patients.
It’s a great resource, and we link to it on our website, but patients should be aware that the studies listed are not vetted by the NIH.
Some private clinics are using the site as part of their marketing efforts to recruit new clients as shown in a recent study published by Leigh Turner, an associate professor at the University of Minnesota Center for Bioethics.
“Many individuals use ClinicalTrials.gov to find legitimate, well-designed, and carefully conducted clinical trials. They are at risk of being misled by study listings that lend an air of legitimacy and credibility to clinics promoting unproven and unlicensed stem cell interventions” said Professor Turner in an interview with RegMedNet regarding the study.
Professor Turner found that private clinics used terms such as “pay to participate”, “patient-funded” or “patient-sponsored” when listing on ClinicalTrials.gov. Typically, patients are not charged to participate in a clinical trial but may be responsible for costs such as travel expenses.
The NIH recently added a disclaimer on the site that they do not endorse the studies listed and that patients should consult with “a trusted healthcare professional before volunteering for a study”. In addition, patients and their caregivers should be given information on how the study will be conducted, what the risks are and what the road to recovery might look like.
For more information regarding stem cell clinical trials, the International Society for Stem Cell Research provides a Web feature called Considering a stem cell treatment. For additional background, we recommend, What you need to know about stem cell therapies, a booklet prepared by the University of Alberta Faculty of Law, Albany Medical College and the Stem Cell Network.