Cystic Fibrosis–India Expansion Project: Expanding and Establishing CF Diagnostics and Clinical Care in Secondary Medical Centers in South India.

This is not a research project. This is a capacity building project funded by the foreign agency. The grant money will be used for purchasing sweat testing equipment, which will be donated to 5 centres across India. The lab staff will be trained to do sweat testing to diagnose CF. This CTRI submission is being done as it was suggested by Health Ministry Screening Committee - The proposal ID 2025-18223 dated 30th June.

Cystic Fibrosis is a life limiting genetic disease which affects people of all races.  It was considered an European disease and very little importance was given to this condition in medical education as well as in hospital practice in India. Diagnostic facility for doing sweat chloride testing -gold standard test for the disease is available only in a handful of centres in India. This leads to mis diagnosis or late diagnosis of CF resulting in severe morbidity and childhood mortality.

In the last 10 years , significant strides have been made in the care of persons with CF ( pwCF ) in India through coordinated efforts of IAP and many Paediatric pulmonologists in the country. CMC has collaborated with  Nationwide Children’s Hospital, Columbus (NCH) and focused on 1) capacity building, 2) training multidisciplinary teams, 3) enhancing education and awareness on CF among healthcare providers and families, and 4) developing cost-effective treatment strategies. Multiple small CF teams or individual doctors  serve as core clinical and educational resources in South India and regions in Northeast India, achieving meaningful improvements in diagnostic and clinical outcomes despite various socio-economic and infrastructural challenges. Experience from these collaborations have emphasized the need to enhance regional access to testing and treatment for CF by establishing better diagnostic and clinical care centers.

We, therefore, propose the ‘CF-India Expansion’ plan to identify, develop, and equip five secondary medical centers (SMCs) in South India to become skilled CF care centers with educational and diagnostic resources that would enhance regional CF care. Improved access to diagnostic facilities will facilitate earlier diagnosis and help reduce severe CF-related morbidity and mortality, particularly in young children.

The International Mentoring Training Initiative (IMTI), offered by the International CF Training Network, is designed to prepare U.S.-based CF multidisciplinary teams to mentor CF teams in LMIC. Supported by the CFF and led by the CF team at the University of Alabama/Children’s of Alabama, the IMTI program aims to establish a robust infrastructure for local training at CF care centers across LMIC. As the CF-India expansion plan aims to develop secondary medical centers into skilled CF diagnostic and clinical care facilities, it is essential that these teams receive training and mentorship from established and effective CF centers to achieve competence.