Earticle

초록

영어

Objective: Until now, there is minimal number of research for overall domestic status of orphan drug use in Korea. The purpose of this study is to identify the list of orphan drugs available in Korea and to understand the status of orphan drug usage in tertiary Hospitals and rare incurable disease Hospital. Methods: We made domestic orphan drug lists based on available orphan drugs in Korea. Based on this lists, we conducted e-mail survey from August, 2014 to September, 2014 to identify domestic status of orphan drug usage including the availability and management of orphan drugs. Results: There are three hundred and eighteen orphan drugs (184 ingredients) registered in Ministry of Food and Drug Safety. Among the three hundred and eighteen orphan drugs, Two hundred and twenty-eight drugs (102 ingredients) were selected. Information on each item was collected and documented with generic and brand names, manufacturers, wholesalers, indications, FDA approval status and insurance coverage. Forty-three tertiary hospitals and thirty-two rare incurable hospitals responded to the survey questionnaire (57.3%). According to the survey result, the antineoplastics and immunomodulating agents group has the highest percentage (40%) usage in the hospital. Of fortythree tertiary hospitals, thirteen hospitals manage orphan drugs separately (30.2%). Based on the reply, most of the healthcare professionals commented the drug information related to efficacy and safety including medication counseling of orphan drugs is insufficient. Conclusion: Through this study we anticipate providing an understanding of orphan drug usage status in Korea. We found the limited resources to the information on orphan drugs and this information requires updating on a regular basis. This can be the basis for further studies about preparing drug information, educational resources for rare disease patients.

목차

ABSTRACT
 연구방법
  국내 희귀의약품 등록 현황
  국내 희귀의약품 사용실태 및 교육현황 설문조사
 연구결과
  국내 희귀의약품 등록 현황
  국내 희귀의약품 사용현황 관련 설문조사
  희귀의약품에 대한 인지도
  희귀의약품 사용 및 관리현황
  희귀의약품관련 정보의 필요성
  희귀의약품 관련 의료진 및 환자교육현황
 고찰
 결론
 감사의 말씀
 참고문헌
 별첨 1. 국내 희귀의약품 사용실태 및 교육현황 설문문항

키워드

저자

• 최경숙 [ Kyung Suk Choi | 이화여자대학교 생명약학부 약학대학, 분당서울대학교병원 약제부 ]
• 정영미 [ Young mi Jeong | 이화여자대학교 생명약학부 약학대학, 분당서울대학교병원 약제부 ]
• 김유정 [ Yu Jeong Kim | 이화여자대학교 생명약학부 약학대학 ]
• 김윤희 [ Yoon Hee Kim | 이화여자대학교 생명약학부 약학대학 ]
• 구현민 [ Hyunmin Gu | 한국희귀의약품센터 ]
• 이병구 [ Byung Koo Lee | 이화여자대학교 생명약학부 약학대학 ]
• 이은숙 [ Eunsook Lee | 분당서울대학교병원 약제부 ]
• 이정연 [ Sandy Jeong Rhie | 이화여자대학교 생명약학부 약학대학 ] Corresponding author

참고문헌

발행기관

간행물

표지보기 관심저널 등록

• 간행물명

  한국임상약학회지 [Korean Journal of Clinical Pharmacy]

• 간기

  계간

• pISSN

  1226-6051

• 수록기간

  1991~2026

• 등재여부

  KCI 등재

• 십진분류

  KDC 518 DDC 615