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PWS Diet Initiative: exploring diet as intervention for Prader-Willi Syndrome

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7/01/2015

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.

RATIONALE

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.

EXPLORATION PLAN

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.

SUCCESS DEFINITION

Sufficient quantitative and qualitative data to suggest relationships between levels of dietary  intervention and patient‐reported outcomes for the  purpose of  informing future research.

ABOUT TREND

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.

CONTACT US

If you are interested in this Diet Initiative, or would like to start your own Exploration, please contact us at interested@trend.community

Maria Picone
Maria PiconeCo-Founder/CEO
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