| Primary contact | Dr. Pádraig Synnott padraigsynnott@mater.ie |
| Principal Investigator | Professor Peter Kelly |
| Sponsor (for clinical trials) | University College Dublin (UCD) |
| Project title | EPIC: European Blood Pressure Intensive Control after Stroke – Pilot trial |
| Project start date and duration | Q2 2023, 2 years |
At the heart of EPIC, is a commitment to the privacy and security of all participants who generously contribute their data. We understand the trust placed in us when sharing personal health-related information, and we take this responsibility seriously.
Our project involves collecting data you have inputted from your home-blood pressure monitor. This includes your blood pressure readings and heart rates. All participants voluntarily consent to share this data. To ensure privacy, all data is anonymized by removing personal identifying information before analysis.
This study is designed and based in UCD. UCD acts as a data controller, always prioritizing data protection and ethical research practices.
For detailed insights into the data types collected, including demographic information, and various health metrics, please refer to our Data Protection Impact Assessment (DPIA) using the link below. The DPIA outlines our approach to collecting, processing, storing, and protecting your data. It also details our commitment to data minimisation and the legal basis for processing personal data under GDPR Article 6.
Your rights regarding your data, including access, rectification, and erasure, are paramount. We've implemented robust technical security measures to safeguard your data, such as pseudonymisation, encryption in transit and at rest, and strict access controls. Our mobile app, central to data collection, adheres to the highest security standards, ensuring the safe transmission and storage of your data on secure, GDPR-compliant cloud servers within the EEA.
For more detailed information on how we collect, use, and protect your data, and to understand your rights as a participant, please click the button below to access our full DPIA document.
No personally identifiable data is stored.
Coded patient data will be archived for up to 25 years per current GCP guidelines. Anonymised data will be retained as an important source of information for stroke research, following completion of the research and destruction of the identifier lists for the pseudonymisation code.
Source data files such as questionnaires, patient diaries are retained for the duration of the projects, archived and destroyed safely, in accordance with the Data Protection Laws and in line with our agreement with research sites governing secure data deletion methods.
The data on the Idatafax database can be erased from storage totally as the system is configured to enable deletion of personal data as per GDPR guidelines. Similar capability exists for the data submitted through the app and stored on google cloud. This will be destroyed at the request of the Sponsor.
Anonymised data will be retained as an important source of information for stroke research, following completion of the research and destruction of the identifier lists for the pseudonymisation code and archived with the Stroke Clinical Trials Network Ireland.
Full details of how your data is stored and retained are set out in section 4.5 (Data Storage and Retention) of our full DPIA document, which you can access using the link below.