Welcome to the Global Prader-Willi Syndrome Registry. The purpose of the registry is to develop a comprehensive database of individuals with PWS to better understand the full spectrum of PWS characteristics, to expedite the completion of clinical trials, and to determine areas of needed research and treatments to improve the lives of those affected by PWS.
This registry is open to all individuals with PWS. It can be completed by the parent or guardian of the person with PWS, or by the person with PWS, if they are able. Please be sure to carefully read the informed consent document before agreeing to participate in the registry. This document contains detailed information on how registry data will be collected, stored, and used. Please read through this information and contact us with any questions. If you are comfortable with all of the terms of the consent document, you can electronically sign it and proceed to answer the registry questions. If you've already signed the consent document and set up your account, you can log in directly.
For the Global PWS Registry, the "participant" is the person with PWS, and the "reporter/respondent" is the person answering questions, often a parent or other legal guardian. There are a couple of steps to complete before entering information about the person with PWS (the "participant").
1. Create an account - After reviewing the Terms and Conditions, create an account with the name and information of the "reporter/respondent".
2. Review and Sign Informed Consent - Once an account is created, there will be the opportunity to "add a participant". This is the name and information for the person with PWS. After adding the participant, you will have the opportunity to carefully review the "Informed Consent" document. This document contains detailed information on how registry data will be collected, stored, and used. If you have any questions about this information, please contact us at firstname.lastname@example.org. If you are comfortable with all of the terms of the consent document, you can electronically sign it and proceed to answering surveys.
Complete the "Getting Started Survey" - this first survey will ask age and sex of the individual with PWS, and these answers will guide some of the questions throughout the other surveys.
Consider enrolling in the PATH for PWS Study – If the PWS participant is >5 years old, meets the other eligibility criteria, please consider enrolling in the PATH for PWS Study.
For access to downloads of IRB approved Global PWS Registry Protocol and Informed Consent documents, click here.