Patient Registries
Through the creation of patient registries, you can:
- Get access to incrementally-updated data for ongoing or long-term research projects
- Indentify patients who are suitable for clinical trials
- Enable scientific research as well as analyses of patient pathways and pharmacoeconomic indicators
- Make a positive impact on the access to treatment for a disease
- Gain recognition as a leader of advancing research in a socially-responsible way
How do we do it?
- Registry is created via the data donation model, based on informed and voluntary consent of patients
- We initiate a partnership with an entity willing to become a data controller or joint controller. It can be for example an NGO, patient association or a scientific society, that has legitimate purpose for processing the data.
- Data is collected from chosen healthcare providers and patients. It is structured, anonymized or pseudonymized and updated periodically, and used for public good.
CASE STUDY
Creating a Registry of Rare Diseases
Data Lake is participating as technology provider to an initiative is to establish a patient-centric registry for a rare disease. This initiative goes beyond the mere collection of essential medical data; it prioritizes the autonomy and well-being of individuals grappling with rare diseases through a robust and informed consent process. This initiative sets a precedent for transparent and efficient consent-based registries, aiming to contribute not only to scientific breakthroughs but also to the establishment of ethical models that can be replicated globally.
EXAMPLE INSIGHTS GENERATED
Advancements in Research
Privacy and Security Measures
- Data Collection
Improved Patient Care
Empowerment of Patients
Building Precedent
Data access without compromise
Better insights from more comprehensive data sets
We believe that it is possible to ensure data access without compromising privacy. We source our data based on patient’s consent, in line with the Data Governance Act, GDPR and other key EU legislative packages. We work together with more than 30 international stakeholders to ensure highest ethical and technological standards of data access.
The result? Better insights from more comprehensive data sets for researchers, gathered ethically with no compromises.
Inspiring trust in science
Due to the use of the blockchain technology and our Patient Portal, every patient stays in control of their data and can give or revoke consents whenever they wish from the comfort of their home. We empower patients to be active participants in research studies.
Due to undeniable proof of consent on the blockchain, we’ve got your back in case of any doubt or legal dispute. Our system was created by leading experts in European data and healthcare law such as the GDPR and Data Governance Act.
We are the first entity to build and implement the technological and infrastructural system for pan-European medical data donation, based on the Data Governance Act and European Health Data Space legislation.
Data Lake Application allows you to track the recruitment across different channels. You will know exactly, who recruited how many patients and when. You will be able to easily generate reports and statistics and share it in real time with your study sponsor.