In recent years, it has become evident that there may be a gross underestimation of the true disease burden of cystic fibrosis (CF) in low-and-middle-income countries. Data on incidence of CF in India are sparse, and optimal CF care is impeded by lack of standardized epidemiological data, limited awareness on the disease impact of CF, and inadequate diagnostic and clinical infrastructure to manage CF. Lack of universal neonatal screening, insufficient sweat testing equipment, and expensive genetic testing preclude timely diagnosis and treatment. Restricted access and costs prohibit consistent use of many CF-specific treatments, leading to high morbidity and early mortality. Early diagnosis is crucial and may be achieved by providing CF-specific education to physicians, ancillary staff, medical trainees, and the community, and by initiating neonatal screening. CF clinical diagnostic scores and indigenously developed sweat collection and analysis are inexpensive diagnostic options when c resources are limited. Targeted mutation panels based on regional heterogeneity of CFTR variants need further investigation. Increasing the number of specialized CF centers will improve access to timely care and reduce travel time significantly. Cost-effective clinical protocols following standardized guidelines (with resource-based modifications) for nutritional health, preventive care, and airway clearance through shared care models are invaluable. Ongoing support for the CF registry initiated by the Indian Council of Medical Research is important for epidemiological assessments and policy change, and patient advocacy through organizations such as CF Trust is vital to increase referrals and diagnostic access, subsidize medications, and procure modulator therapies.
Paul et al. (Sun,) studied this question.
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