- About Global Prader-Willi Syndrome Registry
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 set up your account and answer the registry questions. If you've already signed the consent document and set up your account, you can log in directly.
For additional information or inquiries, please contact us at: firstname.lastname@example.org.
For access to downloads of IRB approved Global PWS Registry Protocol and Informed Consent documents, click here.
STEPS TO THE ENROLLMENT PROCESS
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. 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. Review the "Informed Consent" which includes detailed information about the registry, and how data will be collected/used.
3. 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.
Thank you for contributing to this important resource. If at any point you have any questions on this information or how to complete it, please contact us at email@example.com
ALREADY ENROLLED AND WANT TO UPDATE YOUR SURVEYS?
THE NIH/NCATS GRDR PROGRAM
Global Rare Diseases Patient Registry Data Repository
The Global PWS Registry is a member of the GRDR program https://ncats.nih.gov/grdr
. Our de-identified data integration into GRDR will allow query by investigators to accelerate research across all rare diseases and to develop novel diagnostics and therapeutics for patient beneift.