Healthcare Improvement Scotland facilitated a workshop in Edinburgh on the 16th and 17th of October 2014 to explore the utility of the AGREE II tool to appraise the methodological quality of rare disease guidelines.

The AGREE II tool uses a set of criteria to assess how well a published clinical guideline has been developed. This, in turn, can help guideline users decide how reliable a published guideline is. The AGREE Research Trust manages a comprehensive website of resources for the tool which can be viewed at www.agreetrust.org.

Development of guidelines on rare conditions can be challenging due to a lack of clinical studies and the likelihood that there are only a small number of experts worldwide for many of the conditions. The workshop aimed to investigate how well the AGREE II tool performed in assessing the reliability of rare disease guidelines.

Delegates reviewed two guidelines on the management of Huntington's disease. Based on this exercise, challenges facing organisations who are developing rare disease guidelines were highlighted. Overall the AGREE II instrument was deemed suitable for appraisal of rare disease guidelines but some brief guidance points were developed as prompts to assist appraisers. 

Karen Ritchie

HIS, Healthcare Improvement Scotland