We all want a brighter future for our loved ones with PWS and now, there is an opportunity for EVERY family to participate in making that happen! The Global Prader-Willi Syndrome Registry needs your participation so that we can get a full picture of the wide spectrum of challenges our children with PWS face and we are asking, if you have not yet enrolled, to take a few minutes today to visit the PWS registry and get started. Have you already enrolled? Please return to the registry to complete your surveys – your data is incredibly important!
Registries, like ours, increase the likelihood for developing treatments for rare diseases. It has been consistently shown that registries facilitate standards of care and improve patient outcomes, even in the absence of new therapies. The PWS registry is an incredibly important tool for our community and it is vital that every family enrolls in the registry.
Your personal data will remain secure and private, however, de-identified data will be analyzed to determine trends and better characterize the phenotype of PWS. We are confident that the registry will also expedite trial enrollment so we can see treatments come to market sooner.
Thank you for joining us in this important initiative. Please continue to share the importance of the Registry with everyone you know. You can visit the registry at pwsregistry.org