ICMR launches web portal to tap cleft patients’ data

The Indicleft tool, first-of-its-kind in the world is the first web- and android-based tool and has been developed with the help of National Informatics Centre (NIC) by ICMR and AIIMS Delhi, which helps to establish strategies for prevention and treatment of this deformity.

According to various research studies in India, an estimated one in every 800 children is born with cleft lip or palate. Nearly 35,000 children in India are born with a cleft lip and palate every year.

Launching the web portal, DHR and DG, ICMR, Prof Balram Bhargava said, “Projects like this are really special as here we are looking at the patient information and the new Indicleft tool can be a module for collecting patient’s data. Similar projects like this should be encouraged as they capture robust data, with digital disruption in healthcare and technological dominance, we should start small projects to capture quality data.”

He mentioned the importance of developing a methodology in small and pilot phase of the project before the formation of the Taskforce group for quality data collection, empowering the patients and stakeholders and how IndiCleft can serve as example for such future endeavours in the country.

Elaborating about IndiCleft tool, Dr OP Kharbanda, chief of Centre for Dental Education and Research (CDER) at AIIMS, said, “This tool is a comprehensive aid for cleft patients and will cover components broadly grouped under 10 heads – demographic, socio-economic, maternal history, surgical history, dental history, surgical and post-surgical evaluation, ENT evaluation, speech assessment, genetic evaluation and lastly, dental evaluation.”

He also added that the study on cleft lips has evaluated a few risk factors including maternal smoking and alcohol consumption, intake of drugs during the first trimester of pregnancy and exposure to smoke during the same time by the use of ‘chulha’ (hearth) at home or due to passive smoking.

Informing that the project is on multi-centre mode, Kharbanda said, “ The overall goal of the project is to establish strategies for prevention and treatment of this deformity. The tool has been employed across different participating centres in the country. The Standard Operating Procedures (SOPs) for recording extra and intra oral photographs, radiographs, dental study model and investigations on hearing and speech defect have been developed in the tool itself.”