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Home News Building a cancer patient registry

Building a cancer patient registry

12.10.2019 by Valérie Lizen
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Use case - Association de patients - Création d'un registre de patients

Andaman7 is a digital and multi-pathology health platform that offers solutions for healthcare stakeholders in the broadest sense: research institutions, pharmaceutical companies, medical device manufacturers, hospitals, doctors, medical laboratories, patient associations and health professionals. 

Description 

Building a registry of cancer patients and cancer survivors for POLA (Lithuanian Cancer Patient Coalition).  

POLA is an active non-governmental association in Lithuania that brings together a large number of oncology organisations as well as cancer patients and people providing support to people with cancer. POLA is an independent and transparent organization which represents the interests of patients. The mission of the association is to make every effort to improve the quality of life of cancer patients and their families. 

POLA is an association recognized both for its ethics, since it has no commercial interests, and also for its impact, thanks to its size, since it represents a community of 6,000 patients. 

The Challenge

In Lithuania, there are already cancer patient registries, but they are controlled and managed by government entities and based on data from hospitals and physicians. These data are very often incomplete, old, and therefore unreliable and not easily accessible. This is the reason why the association wants to create its own registry of cancer patients and cancer survivors.

POLA now holds anonymized patient data and wishes to produce scientific publications. The challenge is that POLA wants the process of collecting patient data to remain anonymous for the patients, so that the association could collect data on a regular basis. 

The main challenges for Andaman7 are: to comply with legislation and to allow data to be collected from thousands of patients efficiently and affordably. It is also crucial to gain and keep the trust of patients in this type of effort. 

Our solution 

Thanks to its unique approach and advanced technology, Andaman7 allows forms to be sent to patients repeatedly and the data to be pseudonymized. 

Andaman7 maps the data from the pseudonyme (subject ID) and is able to send the correct forms to the right patients without POLA knowing who they are. 

Several successive forms are sent according to the profile of the patients. 

This method creates an up-to-date, complete, and accurate cancer registry.

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