A qualitative study among guideline developers revealed challenges and strategies for rare disease guideline development
We gained insight into the most salient methodological issues and identified a need for further guidance and method development to improve guideline development processes for rare diseases.
Authors
- Willemijn F. E. Irvine (ORCID: https://orcid.org/0009-0003-2311-1221)
- Federico Germini (ORCID: https://orcid.org/0000-0002-0802-3616)
- Miranda Langendam (ORCID: https://orcid.org/0000-0001-9038-3209)
- Holger J. Schünemann (ORCID: https://orcid.org/0000-0003-3211-8479)
- Martina C. Cornel (ORCID: https://orcid.org/0000-0002-5397-5544)
- Mirthe J Klein Haneveld (ORCID: https://orcid.org/0000-0002-0453-2608)
- Charlotte M.W. Gaasterland
- Agnies M. van Eeghen (ORCID: https://orcid.org/0000-0001-8149-8645)
- Johanna H. van der Lee
Institutions
- Leiden University Medical Center (NL)
- Royal Dutch Pharmacists Association (NL)
- Erasmus MC - Sophia Children’s Hospital (NL)
- GGD Amsterdam (NL)
- Thrombosis and Atherosclerosis Research Institute (CA)
- IRCCS Humanitas Research Hospital (IT)
- Vrije Universiteit Amsterdam (NL)
- University of Amsterdam (NL)
Publication Details
- Journal
- Journal of Clinical Epidemiology
- Published
- 2025-11-07
- DOI
- https://doi.org/10.1016/j.jclinepi.2025.112045
- Primary Topic
- Genomics and Rare Diseases
- Type
- article
- Field-Weighted Citation Impact
- 0.00