Observational analysis identifies key aspects of digitalization in pharmaceutical care for rare diseases, suggesting improvements in regulatory frameworks.
Background. Pharmaceutical care for children with rare diseases is an integral part of the state-sponsored drug benefit system and is facilitated through the Circle of Kindness Foundation. The digitalization and standardization of business processes for the circulation of medicines will help eliminate practical challenges and mitigate risks in managing treatment for these children at the regional level. Methods. The study employed a set of scientific methods, including system, logical, and structural analysis. The objects of the study were regulatory legal acts, the International Classification of Diseases (ICD), the State Register of Medicines, the Unified Register of Registered Medicines of the Eurasian Economic Union, inventory management systems, and analytical datafrom the official websites of government agencies regulating rare diseases and the "Circle of Kindness" Foundation for Support of Children with Severe Life-Threatening and Chronic Diseases. Results. Regional-specific aspects of digitalizing drug provision for children with rare diseases were identified. Conclusion. Enhancing the regulatory framework for digital transformation and standardizing the list of unregistered medicines based on digital information from barcodes or Data Matrix codes will optimize existing digital resources in the field of pharmaceutical care for citizens with rare diseases at the regional level.
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Socolova et al. (2025) studied this question.
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