A long-haired doctor on the right holds a baby with a nasal device, while the baby looks toward another doctor on the left who is reaching out a hand -- In the Lab coverage from STAT
Baby KJ was the first person to receive a tailored gene-editing treatment.Children’s Hospital of Philadelphia

Jason Mast is a general assignment reporter at STAT focused on the science behind new medicines and the systems and people that decide whether that science ever reaches patients. You can reach Jason on Signal at JasonMast.05.

Top Food and Drug Administration officials on Wednesday detailed a roadmap for approving the world’s first personalized gene-editing treatments. 

The perspective, published in the New England Journal of Medicine, comes six months after researchers announced they had crafted a custom gene-editing treatment to fix a unique mutation in KJ, an infant born with an ultra-rare, life-threatening liver disease. 

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KJ’s therapy was hailed as a milestone in the history of medicine, but one of debatable relevance to other patients facing devastating genetic diseases. It required dozens of scientists across several institutions and companies, working for free or at-cost, to come together around a single patient. Researchers have declined to disclose the exact cost, though it likely ran into the millions, if not tens of millions, of dollars.

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