VYKAT™ XR – ETT NYTT LÄKEMEDEL MOTHYPERFAGI VID PRADER–WILLI SYNDROM. Klicka på länken eller ladda ner en pdf.
Research Study Title: An Investigation into post anaesthetic changes in people with Prader-Willi syndrome: common or not?
Researchers at Royal Prince Alfred Hospital in Sydney, NSW, Australia in conjunction with researchers from other parts of the world are conducting a project about changes seen in some people with PWS post anaesthesia.
The research study is looking to recruit people who meet the following criteria:
- Genetically or clinically diagnosed PWS
- Males and Females
- At least 1 past surgical procedure requiring general anaesthesia since 2015
- 12 years to 65 years at time of anaesthetic
Participants will be asked to complete the following research activities if they agree to participate:
- Online based survey
- The survey should take 15 -30 minutes
If you are interested in taking part you can click on the link provided - https://redcap.slhd.nsw.gov.au/surveys/ USE CODE: KCY7JHAYX
If you have further questions please contact the following person corresponding to your region.
Europe /UK: Tony Holland
Oceania/Asia: Janet Franklin or Georgina Loughnan
North America: Mark Lister Mlister@arcalachua.org
South America: Jorgelina Stegmann
If you have questions about the research and would like to speak to the Chief Investigator, please contact the following person:
Chief Investigator
Janet Franklin, Chief Investigator / Dietitian, Phone +61 2 95154232
This study has been approved by the Ethics Review Committee (RPAH Zone) of the Sydney Local Health District, NSW, Australia. Any person with concerns or complaints about the conduct of this study should contact the Executive Officer on 61 +2 9515 6766 RPA and quote protocol number X25-0105
ipwf - Insamlingsstiftelsen för Prader Willi forskning
Stiftelsen startades av föräldrar till barn med Prader Willi Syndrom (PWS) med förhoppningen att få igång svensk forskning och för att på så vis ge alla barn som föds med PWS bättre framtidsutsikter och en chans till ett självständigt liv.
Läs mer på ipwf.se!