COVID-19 pandemic: Is it the right time to develop interconnected national biomedical registries?

Abstract

2021 Korea Genome Organization This is an open-access article distributed under the terms of the Creative Commons Attribution license (http://creativecommons. org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. Biomedical data storage procedures and reuse availabilities are essential for high-quality healthcare, therapeutic protocols improvements, pharmacy vigilance, and public health surveillance. Healthcare personnel and information have recognized the continuous need for the improvement of electronic health records and interoperability among different healthcare/hospital information systems [1]. Moreover, prior research has indicated that the integration of molecular/genomic and clinical data is unquestionably necessary and valuable to fight against the majority of diseases. In biomedical research, relative literature accompanied by clinical and molecular data repositories as well as coordinated actions have already been implemented worldwide to enhance international bio-data exchange and cross-country comparison of healthcare performance [2,3]. Although national-scale electronic registries, healthcare initiatives, and data sharing approaches have been emerged to promote individual medicine, there is still much international effort to accomplish bio-data sharing and overcome sensitive patient data issues. On the one hand, the coronavirus disease 2019 (COVID-19) outbreak has already influenced several human social activities and has changed the modern standard of life. Throughout history, humankind has faced and recorded the consequences of prior epidemics by finding solutions and adopting epidemic response policies [4,5]. Most healthcare systems and medical staff are overstretched every day worldwide. Furthermore, the selective lockdown remains the last of a series of restrictive government measures enacted to fight the spread of the virus and maintain the daily operation of health units at manageable levels as much as possible [6,7]. On the other hand, clinical studies/trials are always at the top of scientific biomedical efforts and research. Since scientists became aware of the discernible risk of new severe acute respiratory syndrome coronavirus (SARS-CoV) strains, more than 4,000 clinical studies/trials have been submitted to the Clinical Trial. Gov database. The recent announcements regarding the SARS-CoV-2 vaccine solutions and the various pharmaceutical interventions have brought hope to the world from a therapeutic and an economic standpoint [8,9]. Additionally, several digital transformation paradigms have emerged through the pandemic, globally. From a health IT perspective, the healthcare crisis has triggered computer scientists and IT companies to develop high-speed networks and software to compensate for travel restrictions and the closure of businesses and educational structures [10,11]. In 2019, we proposed a national biomedical registry framework for the enhancement of clinical research using free open-source software (FOSS). We focused on a data entry framework for the genomic and molecular information of a patient [12]. In addition, in translating multiple query results from the ClinicalTrials.gov database with mesh terms [(‘any condition)’ AND [(‘mutation’) OR (‘SNP’) OR (‘gene’) OR (‘genetic’) OR (‘alCOVID-19 pandemic: Is it the right time to develop interconnected national biomedical registries?