Background

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. 

Objectives:

•    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

ERKNet Expert Panel on Guidelines

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

ERN Guidelines Methodological Handbooks

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. 

 

Introduction of the Handbook

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 #7: Methodology for the Development of Diagnostic, Monitoring and Therapeutic Pathways for Rare Diseases

Handbook #8: Methodology for the Development of Evidence-based Protocols for Rare Diseases

Handbook #9: Methodology for the Development of Do's and Don't's Factsheets for Diseases 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