Text by Susanne London-Tinner
Backpack health or A Marfan and Related Disorders International Patient Registry
During the Amsterdam symposium in May 2018, the Marfan Foundation announced its partnership with Backpack Health in the effort to create an international patient registry for Marfan Syndrome and related disorders. Their joint aim is to enrol 6.000 patients within the first three years. The registry is designed to collect large volumes of de-identified health data allowing significant analyses to advance progress in data-based research. The results may eventually benefit all patients.
Registered patients will be assisted by a mobile app, a personal health records tool that works across all device platforms and makes health information manageable, shareable, portable and even translatable. The app allows patients to have their medical information easily accessible and available “in their backpack”, which could be useful e.g. in case of emergency, when they change or have to consult additional doctors or go abroad. For further details please see the Marfan Foundation page.
If you consider using this new (or any other) mobile health app, you should take time to study the respective private policy terms to find out whether your personal data are protected to an extent which you consider adequate and sufficient. Please be aware at all times of the risks you are facing when you disclose your most sensitive health-related data. Backpack Health state that they are participating in the privacy shield frameworks between the EU and the USA, as well as between Switzerland and the USA, but the recently introduced GDPR (General Data Protection Regulation) rules and processes of the EU have not yet been adopted.