Page 95 - Let them speak Towards a patient reported outcome measure set for

PROs used in clinical trials and core outcome sets
set. This generic core PROM set needs to be validated in the GID population,
and ultimately, implemented in care and research.
Conclusions
This study offers an overview of PROs used for individuals with GID, and
represents one of the first steps toward developing a generic core PRO set
for GID to harmonize PROs used in care and research. The next step involves
carefully selecting the instruments, PROMs, to effectively measure these
PROs; the generic core PROM set. This generic core PROM set must be
validated within the GID population, and implemented in care and research.
Through the utilization of the generic core PROM set, combining and
comparing relevant PRO data will be facilitated and continuous integration
of the patient perspective into both care and research will be ensured,
ultimately leading to more personalized care for individuals with GID.
Acknowledgements
We would like to thank H.A. van Oers, L.A Menke, and C.B. Terwee for their
cooperation within this study.
Ethics approval
Not applicable.
Consent for publication
Not applicable.
Competing interests
The authors declare that they have no competing interests.
Availability of data and materials
The datasets used and analyzed during the current study are available from
the corresponding author on reasonable request.
Keywords
Genetic intellectual disability, patient reported outcomes, patient reported
outcome measures.
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