News

New surveys available! (behavior, medications, supplements, mental health)

We are so excited to announce that the questionnaires on medications, supplements, behavior, and mental health are now available in the registry! (https://pwsregistry.org/) If you already have an account, please come on in and add your information. If you don't already have an account, now is a great time to get started! Please don't hesitate to contact us at info@pwsregistry.org with any questions.

Editing errors in data entry

Did you know that if you accidentally clicked "submit" on a survey and entered incomplete or incorrect data...we can fix it for you! Please contact us at info@pwsregistry.org for assistance. Now is also a great time to check out the newest surveys covering topics like behavior, mental health, medications, and supplements.

Video guide to getting started with the registry

Need help getting started with the Global PWS Registry? There is a video tutorial available on youtube (https://www.youtube.com/watch?v=xnruBvttc7w) Need addtional help? Contact info@pwsregistry.org. We are available for one-on-one calls to walk you through the sign up process.

Guide to Getting Started with the Registry

Need help getting started with the Global PWS Registry? Download and follow this guide to walk you through getting started. Need addtional help? Contact info@pwsregistry.org. We are available for one-on-one calls to walk you through the sign up process.

Online Registry Support

A Facebook group has been created to support you with your Registry needs: Global PWS Registry. If you need help with the registry or just want to ask a question that the registry may be able to answer - this group is here for you! Click here to go to the group.