A standard set of outcome measures for the comprehensive assessment of oral health and occlusion in individuals with osteogenesis imperfecta
Our project resulted in consensus statements for standardization oral health PROMs and CROMs in individuals with OI. This outcome set can improve the standard of care by incorporating recommendations of professionals involved in dental care of individuals with OI. Further, it can facilitate research and international research co-operation. In addition, the significant contribution of the focus groups highlights the relevance of dental and oral health-related problems of individuals with OI.
Authors
- Heidi Arponen (ORCID: https://orcid.org/0000-0003-0359-1486)
- Susan Parekh (ORCID: https://orcid.org/0000-0001-8866-0262)
- Kristofer Andersson (ORCID: https://orcid.org/0000-0001-8366-8804)
- Therese Stutz Steiger
- Dagmar Mekking
- Rohan John (ORCID: https://orcid.org/0000-0001-7946-3013)
- Hans Gjørup (ORCID: https://orcid.org/0000-0002-2988-9398)
- Jean‐Marc Retrouvey (ORCID: https://orcid.org/0000-0003-2112-9201)
- Leming Zhou (ORCID: https://orcid.org/0000-0003-4398-0267)
- A. Ahmad (ORCID: https://orcid.org/0000-0002-8472-8933)
- Sjoerd Colijn
- Min Li (ORCID: https://orcid.org/0000-0002-7113-2700)
- L. Blokland (ORCID: https://orcid.org/0009-0003-7215-6709)
Institutions
- University of Helsinki (FI)
- Helsinki University Hospital (FI)
- Aarhus University Hospital (DK)
- Karolinska Institutet (SE)
- University of Bristol (GB)
- Public Dental Service Västra Götaland (SE)
- Region Västra Götaland (SE)
- Baylor School (US)
- Elkerliek Ziekenhuis (NL)
- Whittington Health NHS Trust (GB)
- Roessingh, Centrum voor Revalidatie (NL)
- University of Hong Kong - Shenzhen Hospital (CN)
- Eastman Dental Hospital (GB)
- Hersenstichting (NL)
- University College London (GB)
- University of Gothenburg (SE)
- University of Hong Kong (HK)
Publication Details
- Journal
- Orphanet Journal of Rare Diseases
- Published
- 2024-08-13
- DOI
- https://doi.org/10.1186/s13023-024-03308-5
- Citations
- 2
- Primary Topic
- Connective tissue disorders research
- Type
- article
- Field-Weighted Citation Impact
- 1.10