PROs for RARE: protocol for development of a core patient reported outcome set for individuals with genetic intellectual disability
This protocol presents the steps for developing a generic core PRO set for children and adults with GID. The next step involves selecting suitable patient reported outcome measures (PROMs) to adequately measure these PROs: the generic core PROM set. This generic core PROM set needs validation in the GID population, and eventually implementation in care and research, facilitating the aggregation and analysis of PRO data and guaranteeing continuous integration of the patient perspective in both care and research.
Authors
- Maud M. van Muilekom (ORCID: https://orcid.org/0000-0001-9540-6254)
- Lotte Haverman (ORCID: https://orcid.org/0000-0001-7849-0562)
- Agnies M. van Eeghen (ORCID: https://orcid.org/0000-0001-8149-8645)
- Nadia Y. van Silfhout
- Clara D. van Karnebeek (ORCID: https://orcid.org/0000-0002-6897-1888)
Institutions
- Emma Kinderziekenhuis (NL)
- Amsterdam Institute for Global Health and Development (NL)
- Public Health Service of Amsterdam (NL)
- Child Development Center (QA)
- Amsterdam University Medical Centers (NL)
- 's Heeren Loo (NL)
- Amsterdam University of Applied Sciences (NL)
- University of Amsterdam (NL)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-09-27
- DOI
- https://doi.org/10.1186/s13023-024-03264-0
- Citations
- 6
- Primary Topic
- Genetics and Neurodevelopmental Disorders
- Type
- article
- Field-Weighted Citation Impact
- 3.30
Funders
- 's Heeren Loo