Page 247 - Let them speak Towards a patient reported outcome measure set for

List of publications
Annelieke R. Müller, Nadia Y. van Silfhout, Bibiche den Hollander, Dick
H.C. Kampman, Lianne Bakkum, Marion M.M.G. Brands, Lotte Haverman,
Caroline B. Terwee, Carlo Schuengel, Joost G. Daams, David Hessl,
Frits A. Wijburg, Erik Boot, Agnies M. van Eeghen (2024). Navigating the
outcome maze: a scoping review of outcomes and instruments in clinical
trials in genetic neurodevelopmental disorders and intellectual disability.
Therapeutic Advances in Rare Disease, 5, 26330040241245721.
Nadia Y. van Silfhout, Maud M. van Muilekom, Clara D. van Karnebeek,
Lotte Haverman, Agnies M. van Eeghen (2024). PROs for RARE: Protocol
for development of a core patient reported outcome set for individuals with
genetic intellectual disability. Orphanet Journal of Rare Diseases, 19(1), 354.
Nadia Y. van Silfhout, Maud M. van Muilekom, Clara D. van Karnebeek,
Joost G. Daams, Lotte Haverman, Agnies M. van Eeghen (2025). Patient
reported outcomes used in clinical trials and core outcome sets for
individuals with genetic intellectual disability: a scoping review. Journal of
Neurodevelopmental Disorders, 17(1), 43.
Nadia Y. van Silfhout, Maud M. van Muilekom, Clara D. van Karnebeek, Lotte
Haverman, Agnies M. van Eeghen (2025). Patient reported outcomes that
matter to individuals with genetic intellectual disability: a qualitative study.
Journal of Neurodevelopmental Disorders, 17(1), 57.
Nadia Y. van Silfhout, Maud M. van Muilekom, Leonie A. Menke, Clara D. van
Karnebeek, Lotte Haverman, Agnies M. van Eeghen (2026). What matters
most? Developing a core patient reported outcome set for individuals with
genetic intellectual disabilities: an international Delphi study. Journal of
Intellectual Disability Research.
Nadia Y. van Silfhout, Maud M. van Muilekom, Leonie A. Menke, Clara D.
van Karnebeek, Lotte Kleinendorst, Erik Boot, Michiel A.J. Luijten, Lotte
Haverman, Agnies M. van Eeghen. Toward a core patient reported outcome
measure (PROM) set for (genetic) intellectual disabilities: evaluating
reliability, efficiency, and validity. Submitted.
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