PWS Diet Initiative: exploring diet as intervention for Prader-Willi Syndrome
TREND EXPLORATION SERIES
Trend Community is excited to announce our 1st Exploration. Currently, our focus is on environmental intervention in Prader‐Willi Syndrome and its co‐morbidities.
Outside of the ketogenic diet for the treatment of epilepsy, the importance of diet & nutrition in orphan disease as clinical intervention is not well understood. Anecdotal reports from parents of children with Prader‐Willi Syndrome (PWS) suggest that a modified version of the ketogenic diet may have beneficial effects in PWS. Although diet has been extensively used and studied as a therapeutic intervention for epilepsy, its use as an intervention for those with PWS has not been tested in clinical trials.
On March 3rd Team Hopefull will join the Give RARE movement to raise money for a series of TREND Explorations looking at diet & nutrition as an intervention for PWS. Beth Zupec‐Kania, consultant nutritionist for the Charlie Foundation will follow and advise a group of individuals with PWS in order to explore the effectiveness and benefits of the ketogenic and related diets for those living with this rare condition.
The PWS Diet Initiative’s Steering Committee is in the process of finalizing the Plan for this Exploration.
With two phases over a six month period this Exploration will introduce fifteen participants to a modified ketogenic diet for the purpose of understanding intervention potential based on patient‐reported outcomes including hunger, cognition, behavior, body composition and quality of life.
Sufficient quantitative and qualitative data to suggest relationships between levels of dietary intervention and patient‐reported outcomes for the purpose of informing future research.
TREND is an information‐sharing platform where communities of patients suffering from chronic diseases, their caregivers and medical professionals can track and share real time health information in order to collectively evaluate the effectiveness of therapies, diet and other interventions.
If you are interested in this Diet Initiative, or would like to start your own Exploration, please contact us at firstname.lastname@example.org