2022 Volume 39 Issue 4 Pages 453-457
Clinical practice guidelines are necessary to support clinical and policy decisions for rare disease, although development of guidelines for rare diseases seems to be challenging due to a few high certainty evidence to determine recommendations. This paper draws from the authors' experience on clinical practice guidelines development for rare diseases.
Strategies regarding clinical practice guidelines for rare diseases were identical to ones regarding the other guidelines, aspects from steps that internationally accepted standards by the Grading of Recommendations Assessment, Development and Evaluation (GRADE) system or Minds Handbook for clinical practice guidelines development 2020. Even if clinical practice guidelines in poor domains of the evidence, recommendations should be presented by GRADE approach as far as it is possible. At the moment of scoping search or beginning of systematic review at the latest, a guideline developing committee should judge carefully whether you push forward guidelines in progress. Good practice statements and future research questions might be improved clinical practice guideline for any disease affected by a relative lack of evidence.
Rigorous guidelines including innovative evidence elicitation and synthesis methods will benefit for individuals with rare diseases. Further refinement should lead to higher quality clinical practice guidelines in rare diseases.
