Global perspectives in orofacial cleft management and research

Area of Science:

• Medical Genetics
• Pediatric Surgery
• Public Health

Background:

• Orofacial clefts (OFCs) are common congenital conditions affecting the lip and palate, leading to mortality and disability if untreated.
• Challenges include lack of awareness, data, equitable access to care, and research prioritization, particularly in underserved populations.
• Current registries often fail to differentiate between syndromic and non-syndromic OFCs, impacting treatment and research.

Purpose of the Study:

• To address contemporary challenges in the management of orofacial clefts.
• To explore prospects for the primary prevention of non-syndromic clefts.
• To highlight difficulties in providing multidisciplinary care and managing long-term consequences of OFCs.

Main Methods:

• Literature review and synthesis of current challenges in OFC management and prevention.
• Analysis of clinical presentation and registry data issues.
• Discussion of multidisciplinary care and sequelae management.

Main Results:

• Significant global challenges exist in OFC awareness, surveillance, equitable care access, and research funding.
• Lack of differentiation between OFC subtypes in data collection hinders targeted interventions.
• Management complexities include multidisciplinary treatment provision and addressing associated dental and psychosocial issues.

Conclusions:

• Improving OFC outcomes necessitates enhanced global surveillance, equitable care access, and dedicated research.
• Accurate phenotyping and data differentiation are critical for effective treatment and quality improvement.
• Primary prevention strategies for non-syndromic OFCs require further investigation and development.