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In April, a paralysed man returning to Colorado from experimental stem cell therapy in India said he could feel the waistband of his pants for the first time in years. Like others before him, he couldn't say how many cells he had received or how his treatments had worked. Nor had his doctor published any details.

In the end, members of CareCure , an online forum for patients, caregivers and their advocates were left to parse through a tantalizing yet frustratingly incomplete anecdote once again.

"Not another one of 'those' stories," one longtime forum member wrote.

"I want to keep on reading about 'those' stories. KEEP posting," another responded.

Eventually, Wise Young, the CareCure forum administrator, weighed in with an all-too-common appraisal. "The sad thing is that the people who are doing this treatment don't seem to be assessing the patients in a rigorous way, documenting what they are doing and seeing in the patients, and [they are] keeping the procedure and the treatment secret," writes Young, a neuroscientist at Rutgers University in New Brunswick, New Jersey, who has visited...