ERN Guideline Programme: ERKNet

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
Patient representatives	Tess Harris	tess.harris@pkdcharity.org.uk
Methodologists	Tanja Wlodkowski	Tanja.Wlodkowski@med.uni-heidelberg.de
Methodologists	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