Health
Folia Health Launches “BRAVE-PWS” Study to Better Understand the Real-World Experience of Prader-Willi Syndrome Caregivers
BOSTON, April 15, 2026 (GLOBE NEWSWIRE) -- 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 longitudina
About this update from Soleno Therapeutics, Inc.
[{"type":"image","alt":"Folia Health","displaySize":"","headline":null,"caption":"Folia Health","className":"","disableSlideshowImg":false,"size":{"original":{"width":300,"height":300,"url":"https://media.zenfs.com/en/globenewswire.com/4fe36d71ae41375b01d793c73595b2cc"},"resized":{"url":"https://s.yimg.com/ny/api/res/1.2/cE.IhFesd7RDdLM7_fyZ_w--/YXBwaWQ9aGlnaGxhbmRlcjt3PTQyMDtoPTQyMA--/https://media.zenfs.com/en/globenewswire.com/4fe36d71ae41375b01d793c73595b2cc","width":300,"height":300}},"lazy":false},{"type":"text","content":"BOSTON, April 15, 2026 (GLOBE NEWSWIRE) -- 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.","length":711,"tagName":"p"},{"type":"text","content":"“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.","length":463,"tagName":"p"},{"type":"text","content":"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 pote...