TREND Community’s Report on Sleep and Rare Conditions
PHILADELPHIA, October 12, 2023 – TREND Community, a digital health analytics company that turns the conversations of rare, chronic, and emerging disease communities into actionable insights, today announced that two posters will be presented at the World Sleep Congress being held October 20-25, 2023, in Rio de Janeiro, Brazil.
The first poster, “Amplifying Voices in Sjögren’s and Lupus Communities Through Social Listening: Real-World Evidence From Their Sleep Experiences”, is based on a study that leveraged TREND’s analysis of over 264,750 posts across 10 public subreddits dedicated to Lupus and Sjögren’s. The work revealed insomnia, sleepiness, sleep apnea, and narcolepsy as sleep issues in both the Sjögren’s and lupus communities. This is important for the management of these conditions, especially since these experiences may not always arise in conversations between patients and clinicians.
The second poster, “Understanding the Patient Experience With Sodium Oxybate Therapy for Narcolepsy”, is based on a study that leveraged TREND’s analysis over 25,018 post across 2 narcolepsy communities, a subreddit and a private Facebook group, both dedicated to narcolepsy. TREND’s proprietary analytics engine, which incorporates artificial intelligence (AI) and natural language processing (NLP), determined that the need to take a second dose of sodium oxybate is associated with various sleep-related issues and disruptions for people with narcolepsy and their caregivers. The study revealed that these patients experience a range of both physical and psychosocial effects—a finding that helps to deepen healthcare providers’ collective understanding of patients’ experiences.
For the complete abstracts, please visit our website:
Understanding the Patient Experience With Sodium Oxybate Therapy for Narcolepsy
This work was funded by Horizon Therapeutics, plc and Avadel Pharmaceuticals.
For additional information about this work and/or collaboration and partnerships with TREND, please contact: Maria Picone at interested@trend.community