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- european reference networks
- ERN ReCONNET
- european commission
- rare connective tissue diseases
- clinical practice guidelines
- unmet needs
What is already known about this subject?
Clinical practice guidelines (CPGs) can guide clinicians on how to treat patients and offer a possible support to optimise the diagnostic/therapeutic process in a difficult field.
CPGs are designed to support the decision-making processes in patient care and their content is based on systematic reviews of clinical evidence, the main source for evidence-based care.
What does this study add?
This work is dedicated to the identification of existing CPGs in the field of rare and complex diseases and to the identification of physicians and patients unmet needs.
This is the preparatory work to define a strategy of implementation of existing CPGs and/or development of new CPGs.
How might this impact on clinical practice?
The implementation and development of new CPGs will support the harmonization of care in rare and complex connective tissue diseases in line with the mission of the European Reference Network ReCONNET.
An impressive number of almost 5000–8000 rare diseases affect the daily lives of around 30 million people in the European Union (EU) and many of those affected by a rare or complex condition do not have access to diagnosis and high-quality treatment.
European Reference Networks (ERNs) are virtual networks involving healthcare providers (HCPs) across Europe with the aim to tackle complex or rare diseases and conditions that require highly specialised treatment and a concentration of knowledge and resources. ERNs offer the potential to give patients and doctors across the EU access to the best expertise and timely exchange of life-saving knowledge, making knowledge travel more than patients.1
Following the first call for proposals in July 2016, the first ERNs were approved in December 2016 and launched in March 2017 in Vilnius during the 3rd conference on ERNs, where their kick off meetings took place. At their inception, the networks comprised more than 900 highly specialised healthcare units located in 313 hospitals in 26 EU countries.2 From …
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