Commentary: What matters most? Outcome measures in Rett syndrome

In the face of clinical and ethical obligations to improve quality of life for individuals with Rett syndrome (RTT), much research remains focused on functional impairments, despite RTT-specific domains of quality of life having recently been identified (12). The recent study by (5) critiques the design of the Rett Syndrome Behavioural Questionnaire (RSBQ) (8), its items, scales, domains and how these relate to clinical presentations of patients. The commentary in response from (9) is a critique of the sample used by (5) in their justification of refuting the RSBQ.
Source: Pediatric Neurology - Category: Neurology Authors: Tags: Opinion Paper Source Type: research