DIFFICULTIES AND PRACTICAL SOLUTIONS IN THE MANAGEMENT OF CYSTIC FIBROSIS: THE INDIAN EXPERIENCE

DIFFICULTIES AND PRACTICAL SOLUTIONS IN THE MANAGEMENT OF CYSTIC FIBROSIS: THE INDIAN EXPERIENCE | Authorea try { document.documentElement.classList.add('js'); } catch (e) { } var _gaq = _gaq || []; _gaq.push(['_setAccount', 'G-8VDV14Y67G']); _gaq.push(['_trackPageview']); (function() { var ga = document.createElement('script'); ga.type = 'text/javascript'; ga.async = true; ga.src = ('https:' == document.location.protocol ? 'https://ssl' : 'http://www') + '.google-analytics.com/ga.js'; var s = document.getElementsByTagName('script')[0]; s.parentNode.insertBefore(ga, s); })(); Skip to main content Preprints Collections Wiley Open Research IET Open Research Ecological Society of Japan All Collections About About Authorea FAQs Contact Us Quick Search anywhere Search for preprint articles, keywords, etc. Search Search ADVANCED SEARCH SCROLL This is a preprint and has not been peer reviewed. Data may be preliminary. 27 July 2025 V1 Latest version Share on DIFFICULTIES AND PRACTICAL SOLUTIONS IN THE MANAGEMENT OF CYSTIC FIBROSIS: THE INDIAN EXPERIENCE Authors : Grace Paul 0000-0003-0963-1784 [email protected] , Sneha D. Varkki , and Sushil Kabra 0000-0002-8890-8261 Authors Info & Affiliations https://doi.org/10.22541/au.175363926.66989845/v1 286 views 148 downloads Contents Abstract Supplementary Material Information & Authors Metrics & Citations View Options References Figures Tables Media Share Abstract 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 burden of CF in India, 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 creating awareness by CF-specific education provided to physicians, ancillary staff, medical trainees, and the community, and initiation of neonatal screening. CF clinical diagnostic scores and indigenously developed sweat collection and analysis are inexpensive options when diagnostic 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 subsidize medications and procure modulator therapies. Supplementary Material File (july 26-2025-cf in india-final.docx) Download 97.40 KB File (table 1-cf in india-challenges and solutions.pdf) Download 56.79 KB Information & Authors Information Version history V1 Version 1 27 July 2025 Copyright This work is licensed under a Non Exclusive No Reuse License. Keywords advocacy challenges cystic fibrosis india low-and-middle-income countries Authors Affiliations Grace Paul 0000-0003-0963-1784 [email protected] Nationwide Children's Hospital View all articles by this author Sneha D. Varkki Christian Medical College Vellore View all articles by this author Sushil Kabra 0000-0002-8890-8261 Indraprastha Apollo Hospitals New Delhi View all articles by this author Metrics & Citations Metrics Article Usage 286 views 148 downloads .FvxKWukQNSOunydq8rnd { width: 100px; } Citations Download citation Grace Paul, Sneha D. Varkki, Sushil Kabra. DIFFICULTIES AND PRACTICAL SOLUTIONS IN THE MANAGEMENT OF CYSTIC FIBROSIS: THE INDIAN EXPERIENCE. Authorea . 27 July 2025. DOI: https://doi.org/10.22541/au.175363926.66989845/v1 If you have the appropriate software installed, you can download article citation data to the citation manager of your choice. Simply select your manager software from the list below and click Download. 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