Regulatory & Policy

EC approves Acadia's Daybu as first-ever Rett syndrome treatment in the EU

The European Commission has granted marketing authorization for Daybu (trofinetide), making San Diego-based Acadia Pharmaceuticals (Nasdaq: ACAD) the first...

EC approves Acadia's Daybu as first-ever Rett syndrome treatment in the EU

The European Commission has granted San Diego-based Acadia Pharmaceuticals (Nasdaq: ACAD) marketing authorization for Daybu (trofinetide) as a treatment for the rare genetic neurodevelopmental disorder Rett syndrome. Daybu becomes the first drug approved for Rett syndrome in the EU. The authorization covers neurobehavioral symptoms in adults and pediatric patients aged five years and older, and extends across all 27 EU member states plus Iceland, Liechtenstein, and Norway.

The European Medicines Agency's Committee for Medicinal Products for Human Use (CHMP) initially issued a negative opinion, which Acadia challenged through a formal re-examination request. The CHMP subsequently reversed its position and issued a positive recommendation, leading to the EC's authorization. Acadia said it will now begin pricing and reimbursement negotiations with national authorities.

The EC authorization rests primarily on the Phase III LAVENDER study in patients with Rett syndrome. The trial used co-primary endpoints of the Rett Syndrome Behaviour Questionnaire (RSBQ) and the Clinical Global Impression-Improvement (CGI-I) scale. Acadia reported statistically significant and clinically meaningful improvements on both measures. The drug had previously received US FDA approval in 2023 under the brand name Daybue.

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Trofinetide is a synthetic, orally bioavailable analogue of glycine-proline-glutamate (GPE), a tripeptide derived from insulin-like growth factor-1 (IGF-1). Preclinical research suggests trofinetide may support neuronal and synaptic function and modulate neuroinflammatory processes implicated in Rett syndrome, although the mechanism by which it produces therapeutic effects remains unknown.

Daybu enters a competitive landscape that, while currently without any other approved EU option, faces emerging pipeline pressure. Gene therapy programs targeting MECP2 directly are advancing in clinical trials — including Neurogene's NGN-401, which has shown sustained gains through 30 months, and Taysha Gene Therapies' TSHA-102, which recently raised USD 200 million to support its pivotal program. As a symptomatic oral treatment rather than a disease-modifying gene therapy, Acadia holds the only approved option in this indication while those programs mature.


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