A systematic pilot feasibility project to develop newborn screening for cystic fibrosis (CF NBS) in a community in South India

Cystic fibrosis (CF) is a serious inherited condition that affects the lungs and digestive system, often leading to early death if not diagnosed and treated early. Many children in India are diagnosed too late, after developing complications. This study will check feasibility of using a test which is used world over to screen newborns. The test screens babies for possibility of CF  using a small drop of blood collected from the baby’s heel and from the umbilical cord (cord blood). Our goal is to find out if such a newborn screening program is possible in this region and if it could later be used more widely. We will recruit babies born in two hospitals in Vellore. Parents will be asked for consent. Babies with abnormal results will be invited for further testing to confirm if they have CF. All information will be kept confidential, and families will receive support and counselling throughout the process. The proposal has been approved for funding by Cystic Fibrosis Foundation.