The more Dr. Fajgenbaum learned, he said, the more he realized how much the field that studied Castleman was in disarray. Researchers focusing on the disease used different terminology to describe the condition, making it difficult to compare published work. Leading experts weren’t in regular communication, and studies were being done over again, even though previous ones had failed.
“It became just abundantly clear that just because you have smart people thinking about a problem doesn’t mean that it’s coordinated at all,” he said.
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