ERN ReCONNET
Activities
Expert Panel on Clinical Practice Guidelines and Clinical-Decision Support Tools
Expert Panel on Clinical Practice Guidelines and Clinical-Decision Support Tools
The European Commission has launched a new programme for ERNs dedicated to Clinical practice Guidelines. A consortium of 5 Health Technologies Assessment Agencies and 2 Specialized Health Training Institutions won the EC Tender. Each ERN is asked to identify an Expert Panel on Clinical Practice Guidelines and Clinical-Decision Support Tools (CPGs & CDSTs). The main aim of this Expert Panel is to be in charge of the development, appraisal and implementation of each specific CPGs & CDSTs at ERN level.
ERN ReCONNET has identified the members of the Expert Panel:
Laurent Arnaud (CHU de Strasbourg, France), George Bertsias (University of Crete, Greece), Alessandra Bortoluzzi (Ferrara University, Italy), Benjamin Chaigne (Hôpital Cochin, France), Laura Damian (County Emergency Clinical Hospital Cluj, Romania), Hervè Devilliers (CHU Dijon-Bourgogne, France), Ilaria Galetti (ERN ReCONNET ePAG representative, Italy), Luca Iaccarino (AO Padua, Italy), Annamaria Iagnocco (Turin University, Italy), Marta Mosca (AOU Pisan, Italy), Alain Meyer (CHU de Strasbourg, France), Cristina Pamfil (County Emergency Clinical Hospital Cluj, Romania), Vasco Romao (Centro Hospitalar Lisboa Norte, Portugal), Carlo Alberto Scirè (Ferrara University, Italy), Vanessa Smith (University Hospital Ghent, Belgium), Alberto Sulli (IRCCS Ospedale Policlinico San Martino Genoa, Italy), Rosaria Talarico (AOU Pisan, Italy), Chiara Tani (AOU Pisan, Italy).
The consortium has developed a toolkit which aims to provide the ERNs methodological guidance and foster skills development for the prioritization, appraisal, adaptation, adoption, development, and implementation of CPGs and CDSTs for rare diseases.
The toolkit is a practical set of methodological handbooks and tools based on relevant existing methodologies applicable to rare diseases, as well as general methodological approaches with broad international consensus.
0. Introduction of the Handbook
1. Prioritisation of Rare Diseases that Require CPGs or CDSTs
2. Appraisal of Existing CPGs and CDSTs for Rare Diseases
3. Adaptation and Adoption of CPGs and CDSTs
4. Methodology for the Development of CPGs for Rare Diseases
5. Methodology for the Development of Clinical Consensus Statements for Rare Diseases
6. Methodology for the Development of Evidence Reports for Rare Diseases
8. Methodology for the Development of Evidence-based Protocols for Rare Diseases
9. Methodology for the Development of Do’s and Don’t’s Factsheets for Diseases for Rare Diseases
10. Methodology for the Development of Quality Measures for Rare Diseases
11. Methodology for the Development of Patient Information Booklets for Rare Diseases
12. Implementation and Evaluation of the Uptake of CPGs and CDSTs for Rare Diseases
