Acadia Presents Daybue at the American Academy of Neurology Annual Meeting!

This is a big, Big, BIG deal! From Acadia’s announcement:

Acadia Pharmaceuticals to Present DAYBUE™ (trofinetide) Clinical Data and Rett Syndrome Real World Evidence at the 2023 American Academy of Neurology (AAN) Annual Meeting

SAN DIEGO–(BUSINESS WIRE)– Acadia Pharmaceuticals Inc. (Nasdaq: ACAD) today announced that four posters in Rett syndrome will be presented at the upcoming American Academy of Neurology (AAN) annual meeting, being held April 22 – 27, 2023 in Boston, Mass.

The poster presentations include a secondary analysis reporting on the communication-related endpoints from the pivotal Phase 3 LAVENDER™ study and an interim analysis of the ongoing, open-label DAFFODIL™ study. Additional poster presentations include physician survey data to illustrate the current state of Rett syndrome treatment and healthcare resource utilization in children with Rett syndrome.

AAN Accepted Posters:

  • P12 – Poster Session 12/P12.4-002: Clinical Management of Rett Syndrome in the Real World: A Physician Survey. Online and in person, Wednesday, April 26, 5:30 – 6:30 p.m. ET
  • P13 – Poster Session 13/P.13.9-004: Elevated Healthcare Resources Utilization and Costs Among Individuals Diagnosed with Rett Syndrome. Online and in person, Thursday, April 27, 8:00 – 9:00 a.m. ET
  • P13 – Poster Session 13/P13.9-005: Trofinetide for the Treatment of Rett Syndrome: An Open-Label Study in Girls Aged 2 to 4 Years. Online and in person, Thursday, April 27, 8:00 – 9:00 a.m. ET
  • P13 – Poster Session 13/P13.9-006: Treatment with Trofinetide Shows Benefit Compared with Placebo in the Ability to Communicate in Individuals with Rett syndrome. Online and in person, Thursday, April 27, 8:00 – 9:00 a.m. ET

I am so excited about this conference BECAUSE a lot of the questions we have as parents could not be answered before this conference. Why? ” First AAN is one of the hardest medical conferences to have new scientific data presented.  They are very strict that the research must be “new” and not previously presented at another medical conference.  Secondly, they impose what is called a “media embargo” on any data accepted for presentation from being talked about or shared publicly before their medical conference.”

That means some of the things we are desperate to know, like the last Poster Session: Treatment with Trofinetide Shows Benefit Compared with Placebo in the Ability to Communicate in Individuals with Rett syndrome. As well as something I’m extremely interested in, the Daffodil trial.

Even though the bulk of Acadia’s presentations aren’t until later this week, they’ve started off with a bang at their main commercial booth. Bill Keller, Acadia’s Vice President, Patient Advocacy and Industry Relations is on hand and Carrie Buchanan from the Greenwood Genetics Clinic is providing her expertise in a lecture at Acadia’s commercial exhibit.

I look forward to living vicariously through updates during this conference and for the information that will become available to us after it is complete!

THANK YOU, ACADIA!! Go Team DAYBUE!!

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