Page 7 - Let them speak Towards a patient reported outcome measure set for
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Table of contents
Chapter 1 General introduction 9
Part 1 A myriad of PROs 23
Chapter 2 Chapter 3 Part 2 Navigating the outcome maze: a scoping review
of outcomes and instruments in clinical trials
in genetic neurodevelopmental disorders and
intellectual disability
PROs for RARE: Protocol for development of a core
patient reported outcome set for individuals with
genetic intellectual disability
Developing the core PRO set for GID 25
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77
Chapter 4 Chapter 5 Chapter 6 Patient reported outcomes used in clinical trials
and core outcome sets for individuals with genetic
intellectual disability: a scoping review
Patient reported outcomes that matter to
individuals with (genetic) intellectual disabilities: a
qualitative study
What matters most? Developing a core patient
reported outcome set for individuals with genetic
intellectual disabilities:
an international Delphi study
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131
