Data Lake

Patient Registries

Patient Registies

We create registries based on patient consent

A periodically updated registry of patients with a specific disease. Real world data is collected based on patient consent with accompanying insights from both providers and patients.

Through the creation of patient registries, you can:

How do we do it?


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.

  • 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. 

Our system solves some of the biggest challenges in medical research.

We would love to hear from you.

Patient Registries - Meeting Form
Please note that by submitting this form, you agree to the following: DATA LAKE SPÓŁKA Z OGRANICZONĄ ODPOWIEDZIALNOŚCIĄ (hereinafter: “Data Lake”) is the controller of your personal data. Personal data will be processed by Data Lake in order to contact you and reprocess the form you sent to us. For more information about the processing of your personal data, including your rights, please see our Privacy Policy page
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