Literature DB >> 25343106

Necessity of cooperation with government on publication of scientific research results for intractable diseases.

Yoshinori Inagaki1, Peipei Song2.   

Abstract

The features of intractable diseases make it an important public health issue and a challenge to medical care worldwide. Investigation of intractable diseases with the support of government is urgently expected to activate clinical and pharmaceutical research to promote diagnosis and treatment for patients with intractable diseases. Moreover, linkage to the international database for research achievement is also necessary so that both researchers and other general citizens can assess research trends in the field of intractable diseases. In Japan, supportive activities for patients and researchers of intractable diseases have been well developed with the support of the Ministry of Health, Labor and Welfare (MHLW). Furthermore, in April 2013, a specific academic communication platform on intractable diseases - the Intractable and Rare Diseases Research (IRDR) Journal - was approved to join a governmental project and receive support from the Japan Society for the Promotion of Science (JSPS) under the auspices of Ministry of Education, Culture, Sports, Science and Technology (MEXT). Cooperation with the Japanese government starting this year is hoped to promote information-sharing based on an academic communication platform and further activate research on intractable diseases.

Entities:  

Keywords:  Intractable diseases; governmental supports; orphan drugs; rare diseases

Year:  2013        PMID: 25343106      PMCID: PMC4204582          DOI: 10.5582/irdr.2013.v2.2.69

Source DB:  PubMed          Journal:  Intractable Rare Dis Res        ISSN: 2186-3644


  4 in total

Review 1.  Novel genomic techniques open new avenues in the analysis of monogenic disorders.

Authors:  Gregor Kuhlenbäumer; Julia Hullmann; Silke Appenzeller
Journal:  Hum Mutat       Date:  2011-02       Impact factor: 4.878

Review 2.  Rare diseases, orphan drugs, and their regulation in Asia: Current status and future perspectives.

Authors:  Peipei Song; Jianjun Gao; Yoshinori Inagaki; Norihiro Kokudo; Wei Tang
Journal:  Intractable Rare Dis Res       Date:  2012-02

3.  New opportunity for orphan drug development in Japan: Early exploratory clinical trial bases promote drug translation from basic studies to clinical application.

Authors:  Peipei Song; Jianjun Gao; Norihiro Kokudo; Wei Tang
Journal:  Intractable Rare Dis Res       Date:  2012-05

Review 4.  Gene, stem cell, and future therapies for orphan diseases.

Authors:  M Ian Phillips
Journal:  Clin Pharmacol Ther       Date:  2012-06-27       Impact factor: 6.875

  4 in total
  3 in total

Review 1.  Current situation and prospects of newborn screening and treatment for Phenylketonuria in China - compared with the current situation in the United States, UK and Japan.

Authors:  Lin Mei; Peipei Song; Norihiro Kokudo; Lingzhong Xu; Wei Tang
Journal:  Intractable Rare Dis Res       Date:  2013-11

Review 2.  Innovative measures to combat rare diseases in China: The national rare diseases registry system, larger-scale clinical cohort studies, and studies in combination with precision medicine research.

Authors:  Peipei Song; Jiangjiang He; Fen Li; Chunlin Jin
Journal:  Intractable Rare Dis Res       Date:  2017-02

Review 3.  Challenges in orphan drug development and regulatory policy in China.

Authors:  Alice Cheng; Zhi Xie
Journal:  Orphanet J Rare Dis       Date:  2017-01-18       Impact factor: 4.123

  3 in total

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