The Conversation (0)
Folia Health announces the launch of Burden and Real-world Assessment of Caregiver Voice and Experiences in Prader-Willi syndrome (BRAVE-PWS), a fully remote observational study, sponsored by Soleno Therapeutics (NASDAQ: SLNO), designed to better understand the real-world experience of caregivers supporting individuals with Prader-Willi syndrome (PWS). The study will use Folia's app-based platform to collect Home-Reported Outcomes (HROs) and longitudinal caregiver-reported data over six months, helping researchers characterize the day-to-day experience associated with PWS and identify the factors that most affect caregiver well-being and household functioning.
"Pragmatic measurement is an important key to drug development that can provide insight into the needs of individuals living with rare diseases, such as PWS. PWS impacts the entire family, including caregivers. The BRAVE-PWS study will give us first-hand information on caregivers' experiences that may inform future research, clinical care strategies, and the evaluation of emerging treatments for PWS," said Nell Meosky Luo, the CEO and Founder of Folia Health.
PWS is a rare neurodevelopmental disorder affecting approximately 1 in 10,000–30,000 individuals and is characterized by cognitive impairment, endocrine dysfunction, behavioral challenges, and hyperphagia—a persistent, overwhelming sensation of hunger and preoccupation with food. Managing hyperphagia and related behavioral symptoms often requires constant supervision and structured routines, creating substantial demands on caregivers and families. Despite recognition of the significant impact PWS has on families, most existing research on caregiver care routine and potential burden relies on cross-sectional studies or retrospective surveys. BRAVE-PWS seeks to address this evidence gap by collecting longitudinal, real-world data directly from caregivers in their home environments.
Using the Folia mobile platform, participants will track weekly updates about both their own well-being and the symptoms and behaviors of the individual with PWS in their care. In addition to serving as a research tool, the platform gives users visual feedback on their tracked data over time. This helps caregivers spot patterns in symptoms, daily habits, and environmental factors that could affect both their own and the individual with PWS's health and wellbeing.
The study aims to enroll caregivers of individuals with PWS across the United States. All study activities, including screening, consent, and data collection, are completed through the Folia mobile app, allowing families to participate from home without clinic visits. For more information and to enroll, visit https://www.foliahealth.com/pws-caregiver-study.
About Folia Health
Folia Health is a patient-led health company and the pioneer of home-reported outcomes (HROs), transforming lived health experiences into valuable structured data insights to advance research and personalized care. The company's platform is built on the belief that the knowledge of patients and caregivers is the missing piece to enable precise, individualized care and high-impact research. Through a useful platform, radical transparency, explicit consent protocols, and data dividend payments, Folia bridges the gap between patients, clinicians, and researchers while maintaining the highest standards of data privacy and patient autonomy. Founded in 2016 by family caregivers and based in Boston, Folia works with individuals across chronic and rare conditions to generate clinical-grade real-world evidence. For more information, visit www.foliahealth.com.
Folia Health Contact:
Matt Berry
Director of Marketing
matt.berry@foliahealth.com
