CRISPR Therapy, ctDNA Testing, and FDA⁤ Views on‌ Rare⁣ Diseases

​ Updated June 05, 2025
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KJ ⁤Muldoon, the first‌ infant ⁤to‌ receive personalized CRISPR gene-editing⁢ therapy, has been released from‍ Children’s Hospital of‍ Philadelphia after 307 days,⁢ marking a ⁤critically important milestone. The experimental treatment, aimed at correcting an ultra-rare disease ⁣preventing his liver from breaking down ammonia, involved three doses administered starting ⁣at six months ​old. Now 10 months old, ‌KJ’s condition is expected to be⁣ far milder, though not fully cured.​ Researchers are exploring ⁤ways to scale this CRISPR therapy for wider use.

Meanwhile, circulating tumor ‌DNA (ctDNA) blood tests are gaining traction ‌in oncology, but their clinical⁢ impact‍ remains uncertain. Data presented at the ASCO meeting suggest that while these tests show promise in detecting cancer recurrence⁣ and treatment resistance, conclusive survival benefits are lacking. University of Pennsylvania cancer researcher⁤ Angela⁤ DeMichelle emphasized the need for rigorous studies to validate ⁢the true value of ctDNA testing, cautioning against ⁣premature interventions​ that could harm⁤ patients.

In other news, Vinay Prasad, the new chief⁤ of‍ CBER ‌at the FDA, ​addressed the national Organization for Rare ‌Disorders,⁤ signaling a possibly ​more flexible ⁤approach to drug approvals for ultra-rare​ diseases.while previously advocating for randomized controlled trials,Prasad acknowledged that not every drug ‌requires one,notably ‍in cases like Baby KJ. He stated the FDA’s commitment to ⁤expediting access to therapies,⁢ even with ‍early signs of promise based on​ biomarker changes​ likely to predict clinical⁣ outcomes. This represents a shift in his stance on ⁤surrogate endpoints, indicating ​a ⁢willingness to act⁢ swiftly on‌ biotech advancements for rare conditions.

Johns ‍hopkins bioethicist Ruth Faden criticized HHS Secretary Robert F. Kennedy, Jr.’s move to drop COVID vaccine recommendations ‍for pregnant individuals. Faden argues this decision disregards evidence of the vaccine’s benefits ⁢for both⁢ mothers and newborns, especially concerning⁣ heightened risks like preterm⁣ birth and stillbirth. ​She deems ⁤Kennedy’s call for randomized controlled trials scientifically ⁣unneeded and ethically‍ indefensible.

What’s next

The ​medical community ⁤will be closely‍ watching⁤ KJ’s progress and⁢ the⁢ long-term⁣ effects of the CRISPR treatment. Further research​ is needed to determine the true clinical value of ctDNA tests and refine their ⁢application in cancer care. The ⁢FDA’s evolving approach to rare disease drug approvals under Vinay Prasad’s leadership ​will also be a ‍key area of ⁢focus.