The PIK3CA Related Conditions International Patient Registry
GoPI3Ks is excited to announce that as of the 17th of November 2020 in Collaboration with other patient advocacy organizations WonderFIL smiles & CLOVES Syndrome Community the launch of PIK3CA Related Conditions International Patient Registry, this is a multi-lingual registry. Working in conjunction with Backpack Health we hope to be able to bring patients, families, medical professionals and researchers together.

What is a patient registry? 

  • A patient registry is an online system set up to collect, store, retrieve, and analyse information on individuals diagnosed with a rare disease.

 Who & what is Backpack Health?

  • Backpack Health is an online service using iOS, Android & web based tools that allows you to input details of your condition, treatment & also enables you to upload documents, audio & video files as well as images. This app gives you a coordinated and easy way to access your health records, track symptoms and share information with healthcare specialists, providers and caregivers.

 Will my data & information be secure?

  • To assure data protection for its users’ information, Backpack Health complies with the EU General Data Protection Regulation (GDPR), adheres to its data protection principles, and participates in the EU-U.S. and Swiss-U.S. Privacy Shield Frameworks and the advice in the light of recent changes to these frameworks. Learn more at backpackhealth.com.
  • By joining, you are agreeing to share pseudonymized information with this group’s administrators, or persons approved by the group administrators, which means your personal data can no longer be linked to you without the use of additional information, such as a code, which will be kept secure by Backpack Health.

 How will taking part help?

  • You can make a real difference to the lives of those with PROS / PIK3CA related conditions by joining the registry & to help the further understanding of the condition.
  • As the number of those living with PROS is relatively small and spread globally, as well as having numerous different medical visits to manage, this registry will help bring patients, families, medical professionals & researchers together.
  • The goal of finding more improved & effective treatment will be significantly increased by having the ability to collate and share medical information with researchers on a single and accessible platform.

 How do I join the registry?

Help with using Backpack Health:

If you have any questions, please visit BackPack Health or send an e-mail to PIK3CARegistry@clovessyndrome.org or help@backpackhealth.com.

TOGETHER WE CAN MAKE A DIFFERENCE

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