Analysis of factors affecting Japanʼs research expenses for research on intractable and rare diseases: Toward an end to the marginalization of intractable and rare diseases as a research topic

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  • Ninomiya Kota
    The University of Tokyo, Graduate School of Pharmaceutical Sciences. IT healthcare Social Cooperation Program.
  • Mizushima Hiroshi
    Center for Public Health Informatics, National Institute of Public Health
  • Kinoshita Hideaki
    The University of Tokyo, Graduate School of Pharmaceutical Sciences. IT healthcare Social Cooperation Program.
  • Imamura Kyoko
    The University of Tokyo, Graduate School of Pharmaceutical Sciences. IT healthcare Social Cooperation Program.

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  • 日本の難病・希少疾患研究における研究費を決定する要因の分析
  • ニホン ノ ナンビョウ ・ キショウ シッカン ケンキュウ ニ オケル ケンキュウヒ オ ケッテイ スル ヨウイン ノ ブンセキ

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<p>Although Japan started taking measures against intractable and rare diseases earlier than other countries, the performance of Japan's research on such diseases has been low compared with Western countries. However, as most of such diseases are inheritable and some are unevenly distributed among regions, Japan needs to improve its research performance in this field, considering that it is the only Asian country developing new drugs. Further, the number of Designated intractable/rare diseases has increased since the Act on Medical Care for Patients with Intractable/Rare Diseases was implemented. Moreover, Japanese medical researchers now need to find treatments for more diseases with a small budget compared to the budget of Western countries; consequently, they must improve their research performance.</p><p>Therefore, this study first revealed the factors that significantly affect Japan's research expenses on intractable and rare diseases by using multiple regression analysis. Research materials were mainly reports from research groups supported by Health and Labour Sciences Research Grants for research on intractable diseases from the Ministry of Health, Labour and Welfare of Japan in FY 2017. After confirming whether the increase and decrease in expenses is consistent with the purpose of the research project, we examined the causes and considered possible solutions.</p><p>The factors of the increase in expenses were as follows: “research period,” “number of research group members,” “number of papers published by the research group in the previous year,” “clinical examination and biobanking,” and “management of patient registry.” Further, the factors of the decrease in expenses included “implementation of basic research.” As all changes were reasonably explained based on the purpose of the research project, the research expenses were found to be properly distributed.</p><p>However, specifically, quite a few research groups redundantly implemented “clinical examination and biobanking” and “management of patient registry” from the beginning by themselves; this seems to be one of the causes of the increase in expenses. As both these factors are internationally considered to be effective in research on such diseases, some countries are trying to build a centralized research infrastructure as a countermeasure for their expensive cost. Therefore, in conclusion, considering the rapid construction of research infrastructure since the launch of AMED (Japan Agency for Medical Research and Development), it is desirable that research infrastructure specialized in intractable and rare diseases be built to support the overlapping tasks in a centralized way through cooperation and the appropriate sharing of roles with other infrastructure.</p>

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