Page 127 - Let them speak Towards a patient reported outcome measure set for

PROs emerging from focus groups and interviews
(G)ID. Ultimately, the set of PROMs will facilitate the ability to aggregate and
compare the most relevant PROs in both care and research, ensuring the
inclusion of the perspectives of the vulnerable patient population with (G)ID.
Acknowledgements
We would like to thank M.J.K. Haneveld, T.C.M. van Gastel, A. Groenewegen,
S. Limmen, H.A. van Oers, L.A Menke, and C.B. Terwee for their cooperation
within this study. We would also like to thank all members of ERN-ITHACA,
in particular all members of the Patient Council and A. Hugon, for their
cooperation and participation within this study. AvE is a member of ERN-
ITHACA.
Ethics approval and consent to participate
The Medical Ethics Review Committee of the Amsterdam UMC declared
that the Medical Research Involving Human Subjects Act (WMO) does not
apply to this study and that a formal ethical approval was not necessary
(W22_345 # 22.413). All participants provided written informed consent.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
Availability of data and materials
The data used and/or analysed during the current study are available from
the corresponding author on reasonable request.
Keywords
Genetic syndromes, intellectual disabilities, patient reported outcomes,
patient reported outcome measures.
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