Rare Disease Network

ReCONNET

ERN ReCONNET

Description

The main aim of ERN ReCONNET is to improve the management of rare connective tissue and musculo-skeletal diseases (rCTDs) across the EU. The main objectives of ERN ReCONNET are: • Realisation of the potential of European cooperation among rCTDs stakeholders, by providing a stable and fully functioning European infrastructure on rCTDs • Provision of highly-specialised care for rCTDs patients and promotion of improvements in the cost-effective delivery of diagnosis, management and monitoring of rCTDs patients • Pooling, advancing and exchanging of knowledge and information on rCTDs by providing training and education for rCTDs stakeholders and by facilitating the mobility of expertise • Stimulating and encouraging collaborative patient-centered research in rCTDs • Promoting the empowerment and the involvement of rCTDs patients in the rCTDs community

General Design

Type
Registry
Data collection type
Retrospective, Prospective
Design
Longitudinal
Design description
Patients with rare connective tissue and musculo-skeletal diseases
Start/End data collection
2018 (ongoing)

Population

Countries
Sweden, Spain, Slovenia, Romania, Portugal, Poland, Netherlands (the), Italy, Greece, Germany, France, Finland, Denmark, Czechia, Belgium
Population age groups
All ages
Inclusion criteria
Hospital patient inclusion criterion

Organisations

Lead organisations
Additional organisations

Contributors

Data dictionaries

Tables
Tables and their description
No results for current selection
Variables
Variables and their description
No results for current selection

Networks

Part of networks

  • Rare Disease Network

Access conditions

Data access conditions
disease specific research
Data use conditions
  • project specific restriction
  • institution specific restriction
Data access fee
false
Release type
Continuous
Prelinked
true

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