Page 253 - Let them speak Towards a patient reported outcome measure set for

List of publications
Chapter 4: Patient reported outcomes used in clinical trials and core
outcome sets for individuals with genetic intellectual disability: a scoping
review
Authors: Nadia Y. van Silfhout, Maud M. van Muilekom, Clara D. van
Karnebeek, Joost G. Daams, Lotte Haverman, Agnies M. van Eeghen.
NvS, MvM, LH, and AvE conceptualized and designed the study. NvS and JD
conducted the search strategy. NvS and MvM analyzed and interpreted the
data. NvS wrote the first version of the manuscript. MvM, LH, AvE, JD and
CvK reviewed and edited the manuscript. All authors read and approved the
final version of the manuscript.
Chapter 5: Patient reported outcomes that matter to individuals with
(genetic) intellectual disabilities: a focus group and interview study
Authors: Nadia Y. van Silfhout, Maud M. van Muilekom, L.A. Menke, Clara D.
van Karnebeek, Lotte Haverman, Agnies M. van Eeghen.
The study was designed by NvS, MvM, AvE, and LH. The study was prepared
and conducted by NvS and MvM. LM was involved as expert in the expert
group meeting and the Delphi study. Data were analyzed by NvS and MvM.
The first draft of the manuscript was written by NvS. MvM, CvK, LH, LM and
AvE provided important revisions on the manuscript. All authors read and
approved the final manuscript.
Chapter 6: What matters most? Developing a core patient reported
outcome set for individuals with genetic intellectual disabilities: an
international Delphi study
Authors: Nadia Y. van Silfhout, Maud M. van Muilekom, Clara D. van
Karnebeek, Lotte Haverman, Agnies M. van Eeghen.
The study was designed by NvS, MvM, AvE, and LH. The study was prepared
and conducted by NvS and MvM. Data were analysed by NvS and MvM.
The first draft of the manuscript was written by NvS. MvM, CvK, LH, and
AvE provided important revisions on the manuscript. All authors read and
approved the final manuscript.
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