Table 1 Recommendations for patient partnership by guideline development stage

Overall

Collaborate with patient representatives from the initial stages;

Facilitate partnership through training, guidance, and/or support where necessary

Prioritization

Prioritize topics that are relevant to individuals and families living with rare conditions

Preparation

Create multidisciplinary guideline working groups in which patient representative input is facilitated and acknowledged

Data synthesis

Collect information from patient communities through quantitative (surveys, patient-led registries) and qualitative methods (focus groups, interviews, patient stories)

Formulation of recommendations

Include patient views in considerations to inform the content and phrasing of recommendations

Implementation

Collaborate with (national) patient organizations in guideline dissemination and implementation