ERN: Clinical Practice Guidelines And Clinical Decision Support Tools

There are a number of challenges surrounding the development of Clinical Practice Guidelines (CPGs) and Clinical Decision Support Tools (CDSTs) for rare diseases. One of the most relevant barriers is the lack of high-quality evidence, which cutting-edge methodological frameworks like GRADE rely on.
Therefore, there is a need for specific methodological approaches that can provide reliable and useful CPGs and CDSTs for rare diseases. The project also aims to provide a common methodology to harmonise the development of CDSTs and CPGs. It is worth noting that within the scope of this document, “rare diseases” is the term used to refer to rare diseases, as well as low prevalence complex diseases. In addition, the term “patient community” includes patients themselves, as well as their representatives, relatives and carers.

This handbook provides the main steps and relevant considerations for including the patient community when developing a clinical practice guideline or a clinical decision support tool on rare diseases. It also sets out approaches to involve and engage them throughout the process and methods to gather feedback from them.

More info and details can be found here.

Download the pdf document here: ERN Guideline CPG and CDST