The PIK3CA Related Conditions International Patient Registry
We wanted to let you know about upcoming changes that could affect your use of Backpack Health. After acquiring Backpack Health in May of 2020, Invicro has made the difficult decision to reduce the scale of activities associated with the platform. We recognize how important Backpack is to individuals with rare and complex conditions, and our aim is to minimize the impact of these changes to the best of our ability.
The platform will remain live indefinitely, and will continue to be provided to users free of charge, but the following service changes will occur:
Active Backpack Health customer and technical support will no longer be available, effective immediately;
The development of new features will be paused indefinitely after May of 2021;
Groups functionality will be discontinued on June 15, 2022.
If you are a member of a Backpack group, please note this means that group surveys, resources, and Share Card content, including condition-specific emergency information provided by group administrators, will be removed from the app on or before June 15, 2022.
We know these changes are significant, and we recognize that some users may wish to start managing their health information on another platform. To facilitate this, we will soon be adding a new feature that will allow you to easily download your data as a ZIP file. You can also always save Share Cards with important health information as PDFs.
For more information about Backpack Health, please visit our Change in Service FAQ. If you have any additional questions or concerns, please email firstname.lastname@example.org, and we will respond as soon as possible.
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?
- You can join the registry here: https://my.backpackhealth.com/join/clovespik3caregistry
- Or you can download the app on the following platforms:
- Backpack Health at Google Play
- BackPack Health
- Backpack Health Apple Store