📌Project 1:
Development of Genomics and Population Health:
A Policy Analysis of Fabry Disease
Conveners:
Professor Shio-Jean Lin, Chi-Mei Medical Center
Abstract:
Taiwan’s authorities promulgated the Rare Disease Control and Orphan Drug Act in 2000. The act promotes the development of and access to orphan drugs through incentives including financial subsidies, exclusive marketing rights for 10 years, and fast-track approval. The National Health Insurance Administration provides reimbursements for more than 90 orphan drugs; however, the safety and effectiveness of orphan drugs are still subject to scientific challenges. Related issues raise continuous debate among different stakeholders, i.e., third-party payers, physicians, patients, health economists, ethicists, and policymakers. With the rapid development of the orphan drugs, there is an urgent need for the development of methodological guidelines. Fabry disease is a kind of lysosomal disease; patients’ lack of α-galactosidase causes neurolipids to accumulate in cells, causing systemic organ damage. Since enzyme-replacement therapy is extremely expensive, it is necessary to examine better strategies. In 2015, the forum convened a committee on new rare genetic diseases, focusing on Fabry disease and exploring its typical and variant forms and treatment modalities. Later that year the forum provided the conclusions of the expert meeting to the Ministry of Health and Welfare’s National Health Insurance Administration.
📌Project 2:
Guidelines for Establishing Healthy Lifestyle and Culture for All
Conveners:
Professor Wen-Harn Pan, Academia Sinica
📌Project 3:
Proposal on Dengue Prevention and Control Policy
Conveners:
Professor Ying-Chin Ko, China Medical University
Professor Hsin-Su Yu, National Health Research Institutes
📌Project 4:
Proposal on Strengthening Food Risk Assessment and Prevention Policy
Conveners:
Professor Ying-Chin Ko, China Medical University
Professor Hsin-Su Yu, National Health Research Institutes
📌Project 5:
The Strategy for Upper Tract Urothelial Carcinoma (UTUC)
Conveners:
Professor Wen-Jeng Wu, Kaohsiung Medical University Chung-Ho Memorial Hospital
Associate Professor Po-Hui Chiang, Chang Gung Memorial Hospital International Medical Center
Abstract:
Upper tract urothelial carcinoma (UTUC) occurs at the epidermis of the upper urinary tract, which includes both the renal pelvis and ureter. UTUC and liver cancer have an unusually high incidence in Taiwan. The NHRI Forum researched countermeasures for the prevalence of UTUC and provided policymakers with recommendations. A platform that includes a database and cloud computing was established to share cancer tissue and questionnaires among multiple research centers in Taiwan. This platform enables the exchange of bioinformatics, helps allocate grants for further research of UTUC, facilitates both translational medicine and precision medicine, and achieves the goal of health promotion.