Pharma
Rare Diseases
Data Collection

Treatment monitoring for rare diseases

Treatment monitoring for rare diseases

Poor data quality and a lack of treatment monitoring in everyday life make itdifficult to allocate the appropriate treatment and medication to hemophiliapatients. dHealth Foundation, together with Patient Advocacy Groups and Roche

Where

Industry

Industry

Ukraine implemented the blockchain-based app CENTIVA LIFE to incentivize patients or the family of child patients to provide/update real-world data. Blockchain technology is being used to preserve the privacy of the patients, allow for a GDPR conform data handling and the transfer of Digital Health Points (DHP) for providing data. Patients and their families use the DHP to redeem benefits.

After one year of preparation which was hampered by the pandemic the first patients are being onboarded this January 2022. It is the expectation of all parties involved that data in the existing patient registry will improve, therefore, therapy outcomes for hemophilia patients will too. Given the current situation in Ukraine the project is on hold. dHealth Foundation is determined to further support Ukrainian patients and their families!

Ukraine implemented the blockchain-based app CENTIVA LIFE to incentivize patients or the family of child patients to provide/update real-world data. Blockchain technology is being used to preserve the privacy of the patients, allow for a GDPR conform data handling and the transfer of Digital Health Points (DHP) for providing data. Patients and their families use the DHP to redeem benefits.

After one year of preparation which was hampered by the pandemic the first patients are being onboarded this January 2022. It is the expectation of all parties involved that data in the existing patient registry will improve, therefore, therapy outcomes for hemophilia patients will too. Given the current situation in Ukraine the project is on hold. dHealth Foundation is determined to further support Ukrainian patients and their families!

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