Development of a preventive healthcare model for patients with Cohen syndrome

2023 Fiscal Year Final Research Report

• Project/Area Number: 20K19192
• Research Category: Grant-in-Aid for Early-Career Scientists
• Allocation Type: Multi-year Fund
• Review Section: Basic Section 58070:Lifelong developmental nursing-related
• Research Institution: Tokyo Kasei University (2023); Bunri University of Hospitality (2021-2022); Seisen Jogakuin College (2020)
• Principal Investigator: Kuraishi Kaori 東京家政大学, 健康科学部, 期限付助教 (50865409)
• Project Period (FY): 2020-04-01 – 2024-03-31
• Keywords: コーエン症候群 / 希少疾患 / 家族看護

Outline of Final Research Achievements

There are 3 contributions from this project. First, we reviewed rare diseases, including Cohen syndrome, and mapped research trends in healthcare for children with the disease and their families. Second, we promoted public understanding of Cohen syndrome through presentations at scientific meetings. Third, we investigated support for children with Cohen syndrome and other rare diseases and their families in the United States. Although this research project required time to build relationships with research collaborators, we were able to connect with clinics and specialists in the U.S. We were also able to build a foundation for model development.

Free Research Field

小児看護学

Academic Significance and Societal Importance of the Research Achievements

研究成果の学術的意義や社会的意義は、次の３点である。１点目、本研究成果を通して希少疾患であるコーエン症候群への社会的理解促進につながった。２点目、これからコーエン症候群の診断を受ける子どもや家族に対して、社会的支援を提供しうる環境整備となった。３点目、米国のコーエン症候群の専門家と繋がったことで、健康管理や生活支援に関する今までにない情報を日本の患者・家族とも共有が可能となった。