COMPREHENSIVE HOME CARE OF CHILDREN WITH FOP (Fibrodysplasia Ossificans Progressiva)

• Project/Area Number: 22659409
• Research Category: Grant-in-Aid for Challenging Exploratory Research
• Allocation Type: Single-year Grants
• Research Field: Lifelong developmental nursing
• Research Institution: Shiga University of Medical Science
• Principal Investigator: KUWATA Hiromi 滋賀医科大学, 医学部, 教授 (70324316)
• Co-Investigator(Kenkyū-buntansha): SAKAMOTO Yutaka 岐阜大学, 教育学研究科, 准教授 (20310039) ; SHIRASAKA Maki 滋賀医科大学, 医学部, 助教 (40378443) ; KOSHIDA Shigeki 滋賀医科大学, 医学部, 特任講師 (70372547)
• Co-Investigator(Renkei-kenkyūsha): KUWATA Kazuo 岐阜大学, 大学院・連合創薬医療情報研究科, 教授 (00170142)
• Research Collaborator: SOGA Hiroyoshi 滋賀医科大学, 医学部, 助教 (40614045)
• Project Period (FY): 2010 – 2012
• Project Status: Completed (Fiscal Year 2012)
• Budget Amount: ¥3,160,000 (Direct Cost: ¥2,800,000、Indirect Cost: ¥360,000); Fiscal Year 2012: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000); Fiscal Year 2011: ¥780,000 (Direct Cost: ¥600,000、Indirect Cost: ¥180,000); Fiscal Year 2010: ¥1,600,000 (Direct Cost: ¥1,600,000)
• Keywords: 小児看護学 / 創薬 / FOP / 質的研究 / SBDD / 実態調査

Research Abstract

FOP is a rare disease in which muscles in the body gradually replaced with bones. The aim of this study isto investigate the actual situation of home care for FOP patients and to consider the possible nursing home care for FOP patients. FOP patients kept moving in mind possible when they could move in in their childhood. FOP children are now dependent on their families, they hope to live their own life in future. Most of mothers experienced to promote their children’s independences. Using logical drug design method, we searched compounds, especially nutrienrs which can interact with ACVR1 mutation region, around H206, and found several compounds including masoprocol and enoximone as possible candidates.

Research Products

• [Journal Article] 「希少難病をもつ子どもと家族の看護」を受講した看護学生の学び (2013)
  • Author(s): 白坂真紀、桑田弘美
  • Journal Title: 滋賀医科大学看護学ジャーナル Pages: 28-31
  • Peer Reviewed
• [Journal Article] FOP 患者の小児期の日常生活 (2012)
  • Author(s): 桑田弘美、曽我浩美、白坂真紀
  • Journal Title: 第42回日本看護学会論文集 小児看護 Pages: 157-160
  • NAID: 40019179007
  • Peer Reviewed
• [Journal Article] FOP患者の小児期の日常生活 (2012)
  • Author(s): 桑田弘美、曽我浩美、白坂真紀
  • Journal Title: 第42回日本看護学会論文集 小児看護 Volume: 42 Pages: 157-160
  • NAID: 40019179007
  • Peer Reviewed
• [Journal Article] FOP患者の小児期の日常生活 (2012)
  • Author(s): 桑田弘美、曽我浩美、白坂真紀
  • Journal Title: 第42回日本看護学会論文集小児看護2012年 Pages: 157-160
  • NAID: 40019179007
  • Peer Reviewed
• [Journal Article] Fibrodysplasia ossificans progressiva研究の最近の知見と看護的課題 (2010)
  • Author(s): 桑田弘美、白坂真紀、桑田一夫
  • Journal Title: 滋賀医科大学看護学ジャーナル Pages: 9-13
  • Peer Reviewed
• [Presentation] Families' experiences of the heterotopic ossification occurred in children with FOP (2013)
  • Author(s): Hiromi Kuwata, Maki Shirasaka, Hiroyoshi Soga
  • Organizer: 25thICN(International Council of Nurses) Conference
  • Place of Presentation: Melbourne
  • Year and Date: 2013-05-19
• [Presentation] Families' experiences of the heterotopic ossification occured in children with FOP (2013)
  • Author(s): Hiromi Kuwata, Hiroyoshi Soga, Maki Shirasaka, Hisayo Okayama, Aki Yamaji, Yuko Tomari
  • Organizer: ICN (International Council of Nursing) Conference 2013
  • Place of Presentation: オーストラリア
• [Presentation] The school life of Child with Fibrodysplasia Ossificans Progressiva (FOP) (2013)
  • Author(s): Hiromi Kuwata, Maki Shirasaka, Aki Yamaji, Hiroyoshi Soga, Yuko Tomari, Kazuo Kuwata
  • Organizer: International Congress of Pediatrics 2013
  • Place of Presentation: オーストラリア
• [Presentation] Home care of children with FOP (2012)
  • Author(s): H. Kuwata, H. Soga, M. Shirasaka, K. Kuwata
  • Organizer: The 4th Congress of the EAPS(European Academy of Paediatric Societies)
  • Place of Presentation: Istanbul
  • Year and Date: 2012-10-06
• [Presentation] FOP(進行性骨化性線維異形成症)患児の異所性骨化に伴う家族の体験 (2012)
  • Author(s): 桑田弘美、山地亜希
  • Organizer: 日本家族看護学会第19回学術集会
  • Place of Presentation: 東京
  • Year and Date: 2012-09-09
• [Presentation] FOP（進行性骨化性線維異形性症）患児の異所性骨化に伴う家族の体験 (2012)
  • Author(s): 桑田弘美、山地亜希
  • Organizer: 日本家族看護学会第19回学術集会
  • Place of Presentation: 東京
• [Presentation] Home care of children with FOP (Fibrodysplasia Ossificans Progressiva) (2012)
  • Author(s): Hiromi Kuwata, Hiroyoshi Soga, Maki Shirasaka, Kazuo Kuwata
  • Organizer: The 4th Congress of the EAPS (European Academy of Paediatric Societies)
  • Place of Presentation: トルコ共和国
• [Presentation] FOP(進行性骨化性線維異形成症)のある生徒の学校生活 (2011)
  • Author(s): 桑田弘美、坂本裕、白坂真紀他
  • Organizer: 日本特殊教育学会第49回大会
  • Place of Presentation: 弘前
  • Year and Date: 2011-09-24
• [Presentation] FOP(進行性骨化性線維異形成症)のある生徒の学校生活 (2011)
  • Author(s): 桑田弘美、坂本裕、曽我浩美, 他
  • Organizer: 日本特殊教育学会第49回大会
  • Place of Presentation: 弘前大学
  • Year and Date: 2011-09-24
• [Presentation] FOP 患者の小児期の日常生活 (2011)
  • Author(s): 桑田弘美、曽我浩美、白坂真紀
  • Place of Presentation: 東京
  • Year and Date: 2011-08-04
• [Presentation] FOP患者の小児期の日常生活 (2011)
  • Author(s): 桑田弘美、曽我浩美、白坂真紀
  • Organizer: 第42回日本看護学会母性看護・小児看護
  • Place of Presentation: 東京
  • Year and Date: 2011-08-04
• [Remarks]
  • URL: http://www.shiga-med.ac.jp/~hqkodomo/fop.html
• [Remarks] 滋賀医科大学医学部臨床看護学講座小児看護学 研究成果【FOP患児の包括的生活支援】
  • URL: http://www.shiga-med.ac.jp/~hqkodomo/fop.html
• [Remarks]
  • URL: http://www.shiga-med.ac.jp/~hqkodomo/fop.html