ERN Guidelines Methodological Handbook
The ERN GUIDELINES Methodological Handbook of the programme of ERN Clinical Practice Guidelines (CPG) and other Clinical Decision Support Tools (CDST) is now available.
This handbook is the outcome of the extensive literature review and consultation process carried out by the Consortium in charge of the implementation of the Programme. The presented methodology is based on the current international “gold standards” that have been developed along the years and used by key international and national bodies and organisations specialised in the development of Clinical Practice Guidelines and other Clinical Decision Support Tools.
This material is an important step forward of the ERN CPG programme and a key element and tool for the work of the ERNs in the production, adaptation, adoption and appraisal of the different guidelines and technical sub-products to be used for now on by all the ERNs. The methodology will ensure the quality and standardisation of the CPG and CDST produced and used by the ERNs, the backbone of the process of the diagnosis and treatment of patients suffering of rare or low prevalence and complex diseases.
The handbook includes 12 separated guidelines addressing the following conceptual and methodological aspects of the programme:
- 1# Prioritisation
- 2# Appraisal
- 3# Adaptation & Adoption
- 4# Elaboration of CPG
- 5# Elaboration of Clinical Consensus Statements
- 6# Elaboration of Evidence Reports
- 7# Elaboration of Pathways
- 8# Elaboration of Evidence Based Protocols
- 9# Elaboration of Do’s & Don’ts Factsheets
- 10# Elaboration of Quality Measures
- 11# Elaboration of Patient Information Booklets
- 12# Evaluation of Uptake of CPGs and CDST
- 13# Patients’ involvment in CPGs and CDST’s on rare diseases