MAHER has identified a number of Generally Less Prioritised Diseases (GLPD) to focus on, based on the disease burden, availability of expertise, facilities and opportunities of treatment, as well as affordability. Orofacial clefting (OFC) is one such disease that describes a range of abnormalities that manifest in the newborn infant involving structures around the oral cavity and facial structures resulting in oral, facial and craniofacial deformity. The primary challenge in the treatment of OFC is that it requires collaboration and cooperation from a wide range of specialisation, beginning with pre-marriage genetic counselling, prenatal screening, obstetric care, neonatal management, pediatric surgery, investigations, etc etc. In India, absence of births defects registry leads to paucity of data. The secondary challenge in OFC is the lack of standardised protocol for standard of care and surgical treatment, since there is an acute lack of sound evidence base. OFC requires follow up care throughout childhood into adulthood. Maintaining continuity of care and tracking of families has always been a challenge. At MI FACE, these challenges have been tackled through establishment of multidisciplinary teams, project management principles and innovative patient data management systems in addition to evolving unique standard operating procedures and protocols, that are well documented, studied and improved upon. MI FACE today is a centre of excellence that serves as a sustainable model being replicated for other similar diseases in India and South Asia.
At MI FACE, over 8000 patients have benefited from the sustained focus and attention on OFC.
The Centre drew international attention due to its high profile successes, and was approached by the ‘Cleft Children International, Zurich, Switzerland’ for collaboration in the year 2003. Till date, more than 10,000 patients have benefited.
Research into OFC at the institute has resulted in publication of over 1000 articles, scientific papers in various high impact factor journals. A textbook on OFC is ready for publication. The Institute is now recognised widely for its expertise in treatment of OFC and attracts patients from all over India, even from far eastern states of Assam and Tripura, which attests to the impact of the institute’s work on the disease.