International Cleft-Care Organizations in the United States: A Systematized Review

Document Type : Systematic Review


1 School of Communication Sciences and Disorders, University of Central Florida, Orlando, FL, USA

2 Department of Biology, University of Central Florida, Orlando, FL, USA



Introduction: Although there are several international cleft-care organizations, there are variations in how these organizations are structured. The purpose of this paper was to analyze international cleft-care organizations based out of the United States. We provided an analysis of each, with a specific focus on team structure, funding, location, and model of care.
Methods: A systematized review was conducted using PubMed using specific MeSH terms and related keywords. Organizations screened had to have the following inclusion criteria: (1) be based out of the United States (2) have a valid web presence.
Results: Nineteen unique international cleft-care organizations were identified in the database search. Most international cleft-care organizations included in this review had originally started with the vertical model and, over time, adopted a diagonal approach including a team-based structure, resulting in an increased need for volunteers. Most organizations reviewed in this paper also demonstrated expansion of care beyond cleft lip and/or palate treatment. The cost of trip per volunteer was variable. The number of trips per year ranged from a minimum of one trip per year to a maximum of 150 trips.
Conclusion: Throughout the analysis of each international cleft-care organization, a common theme of sustainability and self-sufficiency was present. The data compiled in this manuscript enables critical appraisal of various cleft-care organizations, comparison of different models of care, and provides insight on engaging in international cleft-care initiatives.