A consortium of 5 Health Technologies Assessment Agencies and 2 Specialized Health Training Institutions won the EC Tender Nº SANTE/2018/B3/030. The project officially started in January 2020.
• To provide assistance to the ERNs and their healthcare providers in the process of development, appraisal, and implementation for CPGs and CDSTs
• To improve the capacity of the Networks in their task to produce and adhere to high quality CPGs and CDSTs
The setting up of an Expert Panel is part of the ERN Guidelines Programme. The Agency for Health Quality and Assessment of Catalonia (AQuAS, Spain) has outlined the procedure for the selection and was followed for the appointment of members of the ERKNet Expert Panel.
Aim: To be in charge of the development, appraisal, and implementation of each specific Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) at ERN level
Term of office: 3 years
ERKNet | ||
Coordinator | Olivia Boyer | olivia.boyer@aphp.fr |
Clinical Experts | Franz Schaefer | Franz.Schaefer@med.uni-heidelberg.de |
Dieter Haffner | Haffner.Dieter@mh-hannover.de | |
Max Liebau | Max.Liebau@uk-koeln.de | |
Giovanni Montini | Giovanni.montini@unimi.it | |
Dario Roccatello | Dario.Roccatello@unito.it | |
Martin Konrad | konradma@uni-muenster.de | |
Gema Ariceta | gariceta@vhebron.org | |
Patient representatives | Claudia Sproedt | csproedt@leben-eben.com |
Tess Harris | tess.harris@pkdcharity.org.uk | |
Methodologists | Tanja Wlodkowski | Tanja.Wlodkowski@med.uni-heidelberg.de |
Agnes Trautmann | Agnes.Trautmann@med.uni-heidelberg.de | |
ESPN | Elena Levtchenko | Elena.Levtchenko@uzleuven.be |
ERA-EDTA | Aude Servais | Aude.Servais@aphp.fr |
IPNA | Pankaj Hari | pankajhari@hotmail.com |
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.
The methodology will ensure the quality and standardization of the CPG and CDST produced and used by the ERNs.
Handbook #1: Prioritisation of Rare Diseases that Require CPGs or CDSTs
Handbook #2: Appraisal of Existing CPGs and CDSTs for Rare Diseases
Handbook #3: Adaptation and Adoption of CPGs and CDSTs
Handbook #4: Methodology for the Development of CPGs for Rare Diseases
Handbook #5: Methodology for the Development of Clinical Consensus Statements for Rare Diseases
Handbook #6: Methodology for the Development of Evidence Reports for Rare Diseases
Handbook #8: Methodology for the Development of Evidence-based Protocols for Rare Diseases
Handbook #10: Methodology for the Development of Quality Measures for Rare Diseases
Handbook #11: Methodology for the Development of Patient Information Booklets for Rare Diseases
Handbook #12: Implementation and Evaluation of the Uptake of CPGs and CDSTs for Rare Diseases