ERN ReCONNET
Activities
Registry
TogethERN ReCONNET Patient Registry
TogethERN ReCONNET, the European Registry Infrastructure for data harmonization in rare and complex connective tissue and musculoskeletal diseases (rCTDs), aims at integrating all existing and newly developed registries on rCTDs across Europe and providing a sufficient number of cases that will help in better:
- Understanding the natural course of the diseases
- Characterizing diseases in the early phases
- Mapping disease history
- Identifying different disease phenotypes
- Distinguishing predictive variables for disease outcomes.
Information gathered through the long-term follow-up of a large number of patients will facilitate a better assessment of the clinical problems of patients with rCTDs and may help in determining an improved management of these patients and healthcare planning in general.
The creation of a European Registry Infrastructure on rCTDs is crucial to improve clinical practice and disease understanding in the field of rCTDs and ERN ReCONNET offers the natural framework for the development of this project, providing an established Network of rCTDs experts, patients and patients representatives, health economists, policy maker and quality assessors.
TogethERN ReCONNET will represent a European Registry Infrastructure integrating both existing and novel registries within the project timeframe.
In detail, TogethERN ReCONNET aims at:
- Promoting a harmonised data collection approach on rCTDs in Europe
- Integrating and implementing existing rCTDs data
- Improving disease knowledge, clinical management and care provided to rCTDs patients
- Facilitating rCTDs research, post-authorisation studies and cost-effective healthcare planning
TogethERN ReCONNET integrates and improves the existing knowledge in the field of rCTDs, addressing the needs of different stakeholders, supporting the improvement of the disease knowledge and management, current and future policies on the treatment and management of rare diseases.
TogethERN ReCONNET is a Consortium between Azienda Ospedaliero Universitaria Pisana (ERN ReCONNET Coordinator), National center for rare diseases of Italian National Institute of Health (ISS), and the Institute of Management of Sant’Anna School of Advanced Studies.
The TogethERN ReCONNET Registry is part of the Registries and eHealth Working Group, which is focused on:
- Strengthening the provision of highly specialised multi-disciplinary cross-border virtual consultations via the Clinical Patient Management System (CPMS) and improves its awareness and use in ERN ReCONNET
- Supporting the implementation of the TogethERN ReCONNET registry infrastructure
To reach these objectives, the Registries and eHealth WG together with the ReCONNET Coordination Team and the TogethERN ReCONNET Consortium:
- Monitors and supports the improvement of the CPMS and promote the ERN ReCONNET National Hubs
- Contributes to the development of the TogethERN ReCONNET registry infrastructure
The WG Chairs are Prof. João Fonseca from the Centro Hospitalar de Lisboa Norte, EPE (Portugal) and Prof. Matthias Schneider from the Universitätsklinikum Düsseldorf (Germany).
ERN ReCONNET held its Training Course on the TogethERN ReCONNET Registry in November, here is the report in pdf (click to download it)
ERN ReCONNET – TogethERN ReCONNET Registry – Training Course – Report
TogethERN ReCONNET Patient Registry: Dissemination actions & contents
The TogethERN ReCONNET Registry was officially launched by the ERN ReCONNET Network in this important scientific publication.
As the abstract of this important scientific article says “Patient registries play a crucial role in supporting clinical practice, healthcare planning and medical research, offering a real-world picture on rare and complex connective tissue diseases (rCTDs). ERN ReCONNET launched the first European Registry Infrastructure with the aim to plan, upgrade and link registries for rCTDs, with the final goal to promote a harmonized data collection approach all over Europe for rCTDs.
In order to do that, an online survey addressed to healthcare professionals and patients’ representatives active in the field of rCTDs was integrated by an extensive database search in order to build a mapping of existing registries for rCTDs.
This scientific paper can be downloaded here: An overlook on the current registries for rare and complex connective tissue diseases and the future scenario of TogethERN ReCONNET
All the ERN ReCONNET scientific publications can be seen here.
The TogethERN ReCONNET Registry was also presented by the ERN ReCONNET Coordination Team at the following meetings:
In addition, TogethERN ReCONNET was mentioned in the following ERN ReCONNET Newsletters:
