Dravet Syndrome (DS) and Lennox-Gastaut Syndrome (LGS) are rare, severe developmental and epileptic central nervous system disorders that significantly burden patients and caregivers. Both conditions manifest in early childhood and persist in adulthood with a high seizure burden and debilitating non-seizure symptoms, such as delayed communication, mobility challenges, and sleep disturbances. These symptoms profoundly impact the quality of life (QoL) for patients and impose substantial emotional, physical, and financial strain on caregivers.
To address these challenges, Takeda Pharmaceuticals (Takeda) and Amplity undertook a real-world study utilizing Amplity’s AnswerY™ database of unstructured medical transcription records captured during healthcare provider (HCP)-patient conversations. These AI-driven real-world insights were derived from HIPPA-compliant verbatims provide more expansive information than typical electronic health records and provide unique patient-centric insights into reasons for therapy changes, the actual impacts of a disease, and its treatment.
Furthermore, AnswerY’s underlying data captured detailed seizure-type characteristics that are not well defined by International Classification of Diseases codes and paid claims information. Finally, when compared with a study that relies on an individual to personally review medical charts, AnswerY’s proprietary AI-driven real-world insights, which use a natural language processing (NLP) platform are faster, cost-effective, scalable, and more accurate, with less scope for bias and inconsistency of interpretation.
Having analyzed over 5000 HIPAA-compliant transcripts of HCP-patient conversations, researchers at Takeda and Amplity found that:
For commercial, medical affairs, and real-world data (RWD) executives, the Takeda-Amplity study reveals that patients with DS or LGS treated with currently available antiseizure medications still experience substantial seizure and non-seizure burdens. Changes in antiseizure medications are common, often due to AEs and efficacy considerations, suggesting the need for more effective and well-tolerated treatments.
Beyond seizure reduction, these AI-driven real-world insights point to ways in which life sciences companies can address cognitive, behavioral, and physical outcomes, as well as coexisting conditions like autism spectrum disorder (22% of pediatric DS patients) and cardiovascular disease (50% of adults with DS and 32% of adults with LGS). The study also points to the need for HCP and patient educational campaigns to improve QoL for both patients and caregivers.
As the life sciences industry looks to make greater and more efficient use of RWD, this study points to the power offered by NLP-driven qualitative analytics. In the specific case of understanding the challenges faced by patients with DS and LGS, the study and its AI-driven real-world insights, highlight the need for better treatments that not only reduce seizures but also address developmental and cognitive challenges. While further validation is needed, this approach offers valuable insights and could benefit future research, especially rare diseases.
