Findings from this survey will help the PWSA UK advocate for the needs of adults with PWS and the needs of their families. It is for UK families only. All data collected from this survey will be anonymised and initially stored and analysed using a secure database at the University of Cambridge. On completion of the analysis the data will be transferred to PWSA UK and will be stored securely in a manner that is compatible with the Data Protection Act. The results published in the report will be anonymised group data and individuals will not be identifiable and would not be identified unless explicit permission had been given. Thank you for your help.
PLEASE NOTE! In order for us to obtain as much information as possible, this is a long questionnaire. Please set aside 1-2 hours to answer the questions. If you leave the survey and return to it, it will take you to the place where you left off.
IMPORTANT! Please do not complete this survey if you have already completed the survey for the 6 -17 years age range.