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Table 5 Level of engagement in the six research steps in the included 18 articles, measured with Arnsteins’ participation ladder

From: Patient engagement in the design of clinical research in Noonan syndrome spectrum disorders: a scoping review

Research step Total of 18 articles Level on Arnsteins’ ladder
Step 1 Identifying the general study 0  
Step 2 Choosing the research topic 9 Consultation (level 4): 7 times
Placation (level 5): 2 times
Step 3 Formulating plan and technology 2 Consultation (level 4): 1 time
Placation (level 5): 1 time
Step 4 Collecting data 7 Informing (level 3): 6 times
Consultation (level 4): 1 time
Step 5 Analyzing and interpreting data 3 Consultation (level 4): 1 time
Partnership (level 6): 2 times
Step 6 Writing content and other ways of presenting the findings 10 Consultation (level 4): 6 times
Placation (level 5): 2 times
Partnership (level 6): 2 times