ERN Guidelines Programme: Methodological handbooks now available
The ERN Guidelines Consortium has delivered a set of methodological handbooks to support the European Reference Networks in the process of developing and implementing Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) for rare diseases. This toolkit was developed in the framework of the ERNs Guidelines Programme initiative, which seeks to support ERNs to overcome the challenges associated with the development of CPGs and CDSTs for rare diseases. The program is led by a Consortium coordinated by the Andalusian Health and Progress Public Foundation and made up of 5 Health Technologies Assessment Agencies (Andalusian Health and Progress Public Foundation, Instituto de Investigación Sanitaria de Canarias, Instituto Aragonés de Ciencias de la Salud and Agència de Qualitat i Avaluació Sanitàries de Catalunya) and 2 Health Training Institutions, the Andalusian School of Public Health, EASP and the Universitat Oberta de Catalunya, UOC. The program is funded by the European Commission under the SANTE/2018/B3/030 contract.
The current lack of high-quality evidence available for most rare diseases makes it difficult to develop and adhere to reliable and consistent CPGs and CDSTs. The ERN Guidelines Programme seeks to propose a suitable and harmonised methodological approach. ERNs can use this approach to improve the quality of care received by Europeans living with rare diseases and complex conditions. Led by the Coordination Team, the project is organised in a series of work packages focused on governance, capacity-building, and methodological support.
One of the work packages addresses methodology, through the development of a set of twelve methodological handbooks. These provide ERNs with methodological tools for supporting the prioritisation of diseases, , appraisal, adoption, development and implementation of CPGs and CDSTs. They are intended to be updated on an ongoing basis.
The handbooks cover all aspects of ERNs activities on CPGs and CDSTs. As such, topics range from the appraisal of existing guidelines and CDSTs, to methodological guidance for the development of new ones, to the implementation and evaluation of CPG/CDST uptake. It is expected that in combination with the other programme activities, the guidance laid out in these toolkits will enable ERNs and their guideline development group members to enact stronger disease-specific clinical tools. By extension, the aim is that these handbooks will help improve the experiences and outcomes of people living with rare diseases in Europe. The handbooks are already being used by the ERNs, and are currently available on the website of the ERNs.
