Watch the DAYBUE® (trofinetide) in Practice Video Series to Hear Expert Insights on the First Treatment for This Rare Disease

By: CheckRare Staff | Updated on: Jan 28, 2025

 

Rett syndrome thought leaders discuss how DAYBUE® (trofinetide), the first and only FDA-approved treatment for Rett syndrome in adults and pediatric patients 2 years of age and older, plays a role in their patients’ treatment plans, while shedding light on their personal experiences with DAYBUE in their practices.[1,2] Watch the entire DAYBUE in Practice video series below to learn about the DAYBUE clinical trial results, gastrointestinal (GI) management strategies, and how DAYBUE plays an important role in comprehensive Rett syndrome care.

Please see Warnings and Precautions as it relates to diarrhea, vomiting, and weight loss as part of the Important Safety Information featured in the video below or on DAYBUEhcp.com.

Hear Dr Alan Percy,* Pediatric Neurologist at the UAB Children’s Rett Syndrome Clinic, examine the DAYBUE clinical trials and speak to the importance of a multidisciplinary treatment approach to Rett syndrome in the first video in this informative series.

 

In the second installment of this series, Dr Alan Percy and Jane Lane,* Research Nurse Manager at the UAB Children’s Rett Syndrome Clinic, review how they assess individual patient’s needs and responses to treatment with DAYBUE.

Dr Kathleen J Motil,* Professor Emeritus of Pediatrics at Baylor College of Medicine and Gastroenterologist at Texas Children’s Hospital, outlines GI management strategies that may help patients with Rett syndrome get the most from treatment, sharing insights from her practice.

 

The fourth video in this series features Jane Lane discussing how she prepares caregivers for starting patients on DAYBUE, from the importance of setting expectations to tracking patient progress, as well as improvements she has seen among her patients taking DAYBUE.

To conclude the series, Dr Alan Percy discusses the importance of an individualized approach to Rett syndrome care and the role DAYBUE can play in that treatment approach.

*Alan Percy, MD, Jane Lane, RN, BSN, and Kathleen J Motil, MD, PhD, are paid consultants to Acadia.

 

For more information about Rett syndrome and DAYBUE, visit https://daybuehcp.com. See the full Prescribing Information at https://daybuehcp.com/daybue-pi.pdf.

References: 1. Acadia Pharmaceuticals Inc. DAYBUE [Package Insert]. San Diego, CA, 2024. 2. Acadia Pharmaceuticals announces U.S. FDA approval of DAYBUE™ (trofinetide) for the treatment of Rett syndrome in adult and pediatric patients two years of age and older. [press release]. Acadia Pharmaceuticals Inc. March 10, 2023.

©2025 Acadia Pharmaceuticals Inc. Acadia, Acadia Connect, and DAYBUE are registered trademarks of Acadia Pharmaceuticals Inc. All rights reserved. DAY-US-0358 01/25