Table 1 The search strategy for Pubmed
Noonan syndrome spectrum disorder | (Type of) engagement | Patient and their representation |
|---|---|---|
Noonan syndrome Noonan Costello syndrome Cardiofasciocutaneous syndrome Cardio-facio-cutaneous syndrome CFCS Loose Anagen Hair syndrome Loose anagen hair Leopard syndrome LEOPARD syndrome RASopathy | Community participation Policy making Decision making Patient participation Cooperative behaviour Cooperative Recruit Volunteer Empowerment Participation Participate Shared decision Patient activation Engagement Collaboration Cooperation | Patient Patients Family Parent Parents Relatives Patient federation Patient representative organisation |