نوع مقاله : نامه سردبیر
نویسندگان
1 گروه گوارش کودکان، دانشکده پزشکی، دانشگاه علوم پزشکی مشهد، مشهد، ایران
2 گروه عفونی کودکان، دانشکده پزشکی، دانشگاه علوم پزشکی مشهد، مشهد، ایران
3 گروه تغذیه، دانشکده پزشکی، دانشگاه علوم پزشکی مشهد
چکیده
کلیدواژه‌ها
عنوان مقاله [English]
نویسندگان [English]
Cystic fibrosis (CF) is a progressive, multisystem genetic disorder associated with high morbidity and mortality, demanding early diagnosis and lifelong multidisciplinary care. In Iran, the absence of a national newborn screening program, limited access to CFTR modulator therapies, and fragmented healthcare infrastructure have resulted in delayed diagnoses, suboptimal treatment outcomes, and significant burdens on families and the healthcare system. This policy brief draws on national policy review, stakeholder interviews, and the case study of Mashhad’s CF center to highlight systemic gaps and propose actionable solutions. Key policy recommendations include integrating CF into the national newborn screening package using IRT and genetic confirmation, scaling up multidisciplinary CF clinics with specialized personnel and infection control protocols, and revising medical curricula and insurance coverage to support comprehensive care. The paper calls for a data-driven, intersectoral governance model and sustainable financing mechanisms to enhance national capacity in managing CF and improving patients’ quality of life.
کلیدواژه‌ها [English]
)