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‘We are the engine’: a focus group study on clinical practice guideline development with European patient advocates for rare congenital malformations and/or intellectual disability
Klein Haneveld, M. J., de Mortier, C. A., Hugon, A., Cornel, M. C., Gaasterland, C. M. W. & van Eeghen, A. M., 1 Dec 2025, In: Orphanet journal of rare diseases. 20, 1, 169.Research output: Contribution to journal › Article* › Academic › peer-review
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Priority-setting criteria for clinical practice guideline development on rare genetic neurodevelopmental disorders: a Delphi study within the European Reference Network ITHACA
Klein Haneveld, M. J., Oerbekke, M. S., Szakszon, K., Cornel, M. C., Gaasterland, C. M. W. & van Eeghen, A. M., 1 Jun 2025, In: J. Clin. Epidemiol.. 182, 111761.Research output: Contribution to journal › Article* › Academic › peer-review
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‘Mind the Gap’—A Survey on Care Gaps and Priorities for the Transition to Adult Healthcare According to Caregivers of Young People With Rare Conditions Associated With Intellectual Disability
ERN-ITHACA Transition of Care guideline consortium, Jun 2025, In: Journal of intellectual disability research. 69, 6, p. 480-488 9 p.Research output: Contribution to journal › Article* › Academic › peer-review
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