Page 197 - Let them speak Towards a patient reported outcome measure set for

Evaluating the core PROM set
set represents an important step toward harmonized, scientifically robust
PROMs for individuals with GenID.
Acknowledgements
We would like to thank M.J.K. Haneveld and all the involved healthcare
professionals and patient organisations for their cooperation within this
study.
Ethics approval and consent to participate
The Medical Ethics Review Committee of Amsterdam UMC declared that
the Medical Research Involving Human Subjects Act (WMO) did not apply
to this study and that formal ethical approval was not required. Written
informed consent was obtained electronically from all participants.
Consent for publication
Not applicable.
Competing interest
The authors declare that they have no competing interest.
Availability of data and materials
The data used and/or analyzed during the current study are available from
the corresponding author on reasonable request.
Keywords
Intellectual disabilities, rare genetic neurodevelopmental disorders, patient
reported outcomes, patient reported outcome measures.
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