The international project PARENT was supposed to end in 2014, but was extended until October 31, 2015. PARENT was an international project of a Joint Action type, the aim of which was to rationalise and harmonise the development and management of patient registries in various EU Member States. The harmonisation of patient registries in the EU Member States enables a follow-up analysis of data from these registries for the needs of public health and medical research.
The solution, which is the result of an international project PARENT, is to assist the EU Member States in developing comparable and consistent patient registries in the identified areas (chronic diseases, rare diseases, health technologies). The final solution should also assist Member States in providing objective, reliable, timely, transparent, comparable and transferable information used to make the health technologies more effective.
The aim of the project was to:
- provide a comprehensive overview of the current situation in the EU Member States in the field of patient registries;
- develop a prototype of the relevant source of information at EU level (The Registry of the Registries);
- provide advice, guidance and ICT tools for effective and efficient management of patient registries.
The most important output document of the project PARENT will be a recommendation on how to build registries. This document should be approved and delivered to the European Commission by the project finalisation.
The National Health Information Centre (NHIC) participated in this international project since its launch in May 2012.