App to generate India-specific cleft lip database launched

We kept improving the tool and have frozen the 20th version... DR KHARBANDA, CDER-AIIMS head

NEW DELHI: A mobile-based application to create a database on cleft lip was on Thursday launched by the Indian Council of Medical Research (ICMR) in collaboration with the Centre for Dental Education and Researchall India Institute of Medical Sciences (CDER-AIIMS).

Cleft lip or palate is a split or an opening in the lip or the roof of the mouth. An estimated 35,000 babies are born with this congenital condition in India each year.

“We don’t have enough Indiaspecific data on the condition even though it is one of the severe facial deformities in children that affect their adult life if not properly treated on time. The doctors, who are part of our ongoing study, will have access to this tool and will upload all patient data in a given format,” says Dr OP Kharbanda, head, CDER-AIIMS.

The Indicleft Tool was created as part of ICMR’S The Cleft Taskforce project that started in 2010 to establish baseline data on the needs of children with cleft lip and their families. The tool has been tested in three high-volume cleft centres in Delhi, and a centre each in Hyderabad, Lucknow and Guwahati. After several upgrades, the final version will be launched on Thursday.

“We kept improving the recording tool and have frozen the 20th version...” says Dr Kharbanda. Monitoring treatment outcomes is an important part of the project. “Sub-standard repair surgery can lead to impaired speech or other defects. We need to educate everyone involved in the most effective ways of treatment to optimise outcomes,” says Dr SC Sharma, head of ENT department, AIIMS

The data has been divided under 10 heads, which include demographic, socio-economic, maternal history among others. The tool is linked with Global Information System (GIS) for faster and easier analyses of the data generated.

A pilot study done by CDERAIIMS found 54.6% mothers of babies with cleft lip in India were exposed to smoke, both from smoking and exposure to secondhand smoke, including from chulhas, or wood-fired stoves. Smoking during pregnancy is an established cause of babies being born with cleft lip and cleft palate, according to the US Surgeon General’s Health Consequences of Smoking — 50 Years of Progress report released in January 2014.

A part of the research is focused on gene-sequencing of the samples. “We have identified 12 patients...where the condition was seen in three generations, and taken their blood samples for testing...” said Dr Kharbanda.