For untreatable diseases, should you consider unapproved stem cell therapy?

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Regenerative medicine is a controversial field, still in its infancy. There are academic researchers and major biotech companies testing key treatments in high-profile, vetted clinical trials — but there are also fringe clinics promising stem cell injections that can cure everything from Alzheimer’s disease to cerebral palsy, though they have no evidence to back up those claims.

Sketchy clinics pull people in with big promises and slick advertising — anecdotal testimonials posted in online videos on blogs or social media. But some also mimic more reputable scientific endeavors by posting their work on ClinicalTrials.gov — a federal repository that doesn’t always vet postings to ensure their protocols meet federal standards.

“It’s completely impossible for individual patients, even individual physicians, to evaluate the evidence underlying every therapy that’s out there and to make an informed decision,” said [UT Southwestern’s] Sean Morrison.

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The Wild West of information has spawned a side project for many in the space: trying, desperately, to correct the record and help patients make good decisions. Some are simply volunteering their time and expertise to help sort out the science. Others are institutions that offer more legitimate treatments, like the Mayo Clinic, or that fund clinical trials in the area, like the California Institute for Regenerative Medicine.

Experts warn, however, that far more work is needed to help patients sort through the science — particularly since sketchy stem cell clinics can be dangerous.

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