Report of an international workshop to explore the utility of the AGREE II instrument for appraisal of rare disease guidelines

Abstract

Aims and background: RARE-Bestpractices is afour-year European collaborative project that has as one of its primary goalsthe facilitation of global access to trustworthy guidelines on rare diseases.This paper describes the findings of a workshop held with representatives often RARE-Bestpractices partner organisations to explore the utility of theAGREE-II instrument for the quality appraisal of rare disease guidelines. Methods: Participants viewed theonline AGREE-II Overview Tutorial and worked in small groups to completeappraisals of two guidelines on Huntington's disease. Participants discussedtheir views on using the instrument to appraise rare disease guidelines. Results and discussion: All domains and items of the AGREE-II instrument wereconsidered relevant to appraising the quality of the selected guidelines;additionally, it was possible to identify information within the guidelines tosupport a judgment on the score for each item. Discussion on areas ofdifficulty or disagreement has resulted in a set of guidance notes on how toaddress problems of interpretation that may commonly be encountered whenapplying AGREE-II to rare disease guidelines. Conclusion: the AGREE-II instrument isapplicable regardless of the small patient numbers, potentially small volume ofevidence, and other limitations typically encountered in rare diseaseguidelines.