IndiCleft – A web-based standardized research tool and resource for cleft anomalies

Abstract

Introduction: In India, approximately 35,000 new cleft patients are born every year. Many patients receive suboptimum, improper, little, or no treatment. The cumulative burden of cleft care is up to 1 million cases. The spectrum of problems is varied, the caseload is enormous, and the logistics of treatment delivery are complicated. The Indian Council of Medical Research (ICMR) task force project was launched in 2012 to evaluate the status of cleft care in India and develop strategies to provide comprehensive cleft care through a dynamic multidisciplinary and multidimensional tool. ICMR task force project (2012–14) was conducted in Delhi, and the National Capital Region reported that at least 50% of studied cases had complex and multiple treatment needs. The needs identified were related to surgical, orthodontic, dental, ENT and Speech, rehabilitation of mutilated dentition, and various psychological disturbances among patients with Cleft anomalies. Aim: The aim of this study was to develop and test web-based application to create a system for national data of patients with cleft anomalies and digitize the patient records in a standardized preagreed format. Methods and Results: Corresponding to contemporary digital technologies and evolutionary improvements in data collection, web-based data collection instrument, including text, photographs, X-rays, and audio files, was considered the most appropriate. The experts from varied domains in consultation with ICMR and National Informatics Centre evolved a web-based data collection instrument which is named the “IndiCleft tool.” The tool has been tested and used over the years and is presently being upgraded to dynamic version for a national data and patient care registry. Conclusion: The present article describes the process of the development of a “dynamic” web-based data collection instrument. The IndiCleft tool is the national resource on cleft data in India.