Enroll Now in the Global Prader-Willi Syndrome Registry

BE A PWS REGISTRY CHAMPION! It Starts With Us. We are thrilled to announce the launch of the Global Prader-Willi Syndrome Registry and invite you to enroll today! 

The Global PWS Registry is the single most powerful tool we have as a community to advance PWS research. Registries have been proven to increase the likelihood for developing a treatment for rare diseases, like PWS, and it has been consistently shown that registries facilitate standards of care and dramatically improve patient outcomes and life expectancy, even in the absence of new therapies.

During the month of May, we challenge the PWS community to the "PWS Registry Challenge". To participate:

  1. Enroll in the registry at pwsregistry.org
  2. Tag 3 friends and challenge them to enroll in 48 hours or make a donation to the Foundation for Prader-Willi Research.
  3. Show your support with one of our customizable Registry Profile Pics!

 



 

Need help getting started?

Follow our guide to 
Getting Started with the PWS Registry.
Still have questions?  Real-Time help tutorials are now available to assist you in navigating the registry and to answer questions you may have. You will see the registry enrollment process first hand and enroll yourself with the personal guidance of Jessica Bohonowych. The first tutorials will be offered this Thursday at 10AM EST and Friday at 3PM EST. Call-in information is below.

Prefer email? Contact Jessica directly at info@pwsregistry.org


 

Frequently Asked Questions 

What is the Global PWS Registry? The Registry is a comprehensive and secure database consisting of electronic surveys to collect information on developmental history, medical complications, and quality of life. You will be asked to provide details on topics such as as developmental milestones, scoliosis, medications, appetite, behavior and other clinical symptoms.
Who can participate? If you have PWS, or if you are the parent or legal guardian of a person with PWS, we invite you to participate in the Global PWS Registry. The registry is open to all individuals with PWS and can be completed by a parent or guardian, or by the person with PWS, if s/he is able.
Is my information secure? Yes!  The Global PWS Registry is hosted by NORD, the National Organization for Rare Disorders, a nonprofit organization that has served the Rare Disease community for more than 40 years. The NORD registry platform has been developed according to NIH best practices, with input from the FDA, and is confidential and secure.
What will the PWS Registry do? The Registry Will:

  • Document the full range of PWS characteristics
  • Enable data trend analysis to generate new insights and identify areas for additional study
  • Facilitate partnerships with university researchers and pharmaceutical companies
  • Guide the development of standards of care
  • Expedite the completion of PWS Clinical trials
  • Allow participants to store their PWS medical data in one place
  • Accelerate solutions for PWS
I'm in PWSA(USA)'s database, should I join the Global Registry, too ??
Yes! The Global PWS Registry is unique in that the Registry questions and protocol have been reviewed and approved by an independent IRB, and the data is collected after participants provide 'informed consent'.  Only data collected in this way (ie, compliant with the policies of the NIH Office of Human Research Protection) can be fully utilized by university and government (NIH, FDA, etc) researchers and published in major medical journals.  The procedure for matching participants with clinical trials has also been reviewed and approved by the IRB, facilitating patient recruitment. Finally, the Registry information is maintained in a secure manner, compliant with patient privacy laws.
Who may I contact if I have questions about participating in the registry? Please send inquiries to: 
registry@fpwr.org
YOU ARE CHALLENGED! 

Topics: Research

Susan Hedstrom

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Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the natural history of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she hosted her first One SMALL Step walk in 2010 and began the development of the One SMALL Step walk program which now raises over $1.5 million a year for PWS research.

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