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Volumn 38, Issue 3, 2012, Pages 148-153

A fair share for the orphans: Ethical guidelines for a fair distribution of resources within the bounds of the 10-year-old European Orphan Drug Regulation

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; BIOETHICS; DRUG MANUFACTURE; ECONOMICS; EUROPE; FINANCIAL MANAGEMENT; HEALTH CARE DELIVERY; HEALTH CARE POLICY; HUMAN; LEGAL ASPECT; MEDICAL ETHICS; MORALITY; ORGANIZATION AND MANAGEMENT; PRACTICE GUIDELINE; RARE DISEASE; RESEARCH; RESOURCE ALLOCATION;

EID: 84860431228     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/medethics-2011-100094     Document Type: Article
Times cited : (27)

References (25)
  • 1
    • 84860466866 scopus 로고    scopus 로고
    • (accessed 1 Oct 2010)
    • Orphanet. http://www.orpha.net/consor/cgi-bin/index.php (accessed 1 Oct 2010).
    • Orphanet
  • 2
    • 33749248317 scopus 로고    scopus 로고
    • Rare essentials: drugs for rare diseases as essential medicines
    • Stolk P, Willemen MJ, Leufkens HG. Rare essentials: drugs for rare diseases as essential medicines. Bull World Health Organ 2006;84:745-51.
    • (2006) Bull World Health Organ , vol.84 , pp. 745-751
    • Stolk, P.1    Willemen, M.J.2    Leufkens, H.G.3
  • 3
    • 33846942298 scopus 로고    scopus 로고
    • Our moral obligations in caring for patients with orphan cancers
    • Fernandez CV. Our moral obligations in caring for patients with orphan cancers. CMAJ 2007;176:297, 99.
    • (2007) CMAJ , vol.176 , Issue.297 , pp. 99
    • Fernandez, C.V.1
  • 5
    • 34748880066 scopus 로고    scopus 로고
    • Access to information supporting availability of medicines for patients suffering from rare diseases looking for possible treatments: the EuOrphan Service
    • Stakisaitis D, Spokiene I, Juskevicius J, et al. Access to information supporting availability of medicines for patients suffering from rare diseases looking for possible treatments: the EuOrphan Service. Medicina (Kaunas) 2007;43:441-6.
    • (2007) Medicina (Kaunas) , vol.43 , pp. 441-446
    • Stakisaitis, D.1    Spokiene, I.2    Juskevicius, J.3
  • 6
    • 11844291120 scopus 로고    scopus 로고
    • Equity, access and economic evaluation in rare diseases The impact of orphan drug legislation on health policy and patient care
    • Bosquanet N, Domenighetti G, Beresniak A, et al. Equity, access and economic evaluation in rare diseases. The impact of orphan drug legislation on health policy and patient care. Pharm Dev Regul 2003;1:151-7.
    • (2003) Pharm Dev Regul , vol.1 , pp. 151-157
    • Bosquanet, N.1    Domenighetti, G.2    Beresniak, A.3
  • 8
    • 15044363337 scopus 로고    scopus 로고
    • Ethical issues in funding orphan drug research and development
    • Gericke CA, Riesberg A, Busse R. Ethical issues in funding orphan drug research and development. J Med Ethics 2005;31:164-8.
    • (2005) J Med Ethics , vol.31 , pp. 164-168
    • Gericke, C.A.1    Riesberg, A.2    Busse, R.3
  • 10
    • 0003412671 scopus 로고
    • Cambridge: Cambridge University Press
    • Daniels N. Just Health Care. Cambridge: Cambridge University Press, 1985.
    • (1985) Just Health Care
    • Daniels, N.1
  • 11
    • 0015874193 scopus 로고
    • The WHO definition of 'health'
    • Callahan D. The WHO definition of 'health'. Stud Hastings Cent 1973;1:77-88.
    • (1973) Stud Hastings Cent , vol.1 , pp. 77-88
    • Callahan, D.1
  • 13
    • 39749104734 scopus 로고    scopus 로고
    • Mind the gap!Three approaches to scarcity in health care
    • Denier Y. Mind the gap!Three approaches to scarcity in health care. Med Health Care and Philos 2008;11:73-87.
    • (2008) Med Health Care and Philos , vol.11 , pp. 73-87
    • Denier, Y.1
  • 14
    • 0032982461 scopus 로고    scopus 로고
    • Equitable rationing of highly specialised health care services for children: a perspective from South Africa
    • Landman WA, Henley LD. Equitable rationing of highly specialised health care services for children: a perspective from South Africa. J Med Ethics 1999;25:224-9.
    • (1999) J Med Ethics , vol.25 , pp. 224-229
    • Landman, W.A.1    Henley, L.D.2
  • 15
    • 33749257464 scopus 로고    scopus 로고
    • Are drugs for rare diseases "essential"?
    • Reidenberg MM. Are drugs for rare diseases "essential"? Bull World Health Organ 2006;84:686.
    • (2006) Bull World Health Organ , vol.84 , pp. 686
    • Reidenberg, M.M.1
  • 16
    • 44849143056 scopus 로고    scopus 로고
    • Why rare diseases are an important medical and social issue
    • Schieppati A, Henter JI, Daina E, et al. Why rare diseases are an important medical and social issue. Lancet 2008;371:2039-41.
    • (2008) Lancet , vol.371 , pp. 2039-2041
    • Schieppati, A.1    Henter, J.I.2    Daina, E.3
  • 17
    • 84860446593 scopus 로고    scopus 로고
    • (accessed 1 Jul 2010)
    • http://www.who.int (accessed 1 Jul 2010).
  • 18
    • 33646240617 scopus 로고    scopus 로고
    • Orphan drugs revisited
    • discussion 50-1
    • McCabe C, Tsuchiya A, Claxton K, et al. Orphan drugs revisited. QJM 2006;99:341e5; discussion 50-1.
    • (2006) QJM , vol.99 , pp. 341-345
    • McCabe, C.1    Tsuchiya, A.2    Claxton, K.3
  • 19
    • 27744461277 scopus 로고    scopus 로고
    • Drugs for exceptionally rare diseases: do they deserve special status for funding?
    • Hughes DA, Tunnage B, Yeo ST. Drugs for exceptionally rare diseases: do they deserve special status for funding? QJM 2005;98:829-36.
    • (2005) QJM , vol.98 , pp. 829-836
    • Hughes, D.A.1    Tunnage, B.2    Yeo, S.T.3
  • 20
    • 0034193699 scopus 로고    scopus 로고
    • Orphan drugs and orphan diseases. Round table proceedings, 3rd European Pediatric Neurology Society Congress. Nice, November 1999
    • Campos-Castello J, Ponsot G, Feillet F, et al. Orphan drugs and orphan diseases. Round table proceedings, 3rd European Pediatric Neurology Society Congress. Nice, November 1999. Eur J Paediatr Neurol 2000;4:141-9.
    • (2000) Eur J Paediatr Neurol , vol.4 , pp. 141-149
    • Campos-Castello, J.1    Ponsot, G.2    Feillet, F.3
  • 21
    • 33947307973 scopus 로고    scopus 로고
    • Orphan drugs: Unmet societal need for non-profitable privately supplied new products
    • Moors E, Faber J. Orphan drugs: Unmet societal need for non-profitable privately supplied new products. Research Policy 2007;36:336-54.
    • (2007) Research Policy , vol.36 , pp. 336-354
    • Moors, E.1    Faber, J.2
  • 24
    • 79959607780 scopus 로고    scopus 로고
    • A normative approach to care ethics: the contribution of the Louvain tradition of Personalism
    • Gastmans C, Dierickx K, Nys H, Schotsmans P, eds. Antwerpen-Oxford: Intersentia
    • Vanlaere L, Gastmans C. A normative approach to care ethics: the contribution of the Louvain tradition of Personalism. In: Gastmans C, Dierickx K, Nys H, Schotsmans P, eds. New Pathways for European Bioethics. Antwerpen-Oxford: Intersentia, 2007:99-118.
    • (2007) New Pathways for European Bioethics , pp. 99-118
    • Vanlaere, L.1    Gastmans, C.2
  • 25
    • 48749104047 scopus 로고    scopus 로고
    • A personalist approach to public-health ethics
    • Petrini C, Gainotti S. A personalist approach to public-health ethics. Bull World Health Organ 2008;86:624-9.
    • (2008) Bull World Health Organ , vol.86 , pp. 624-629
    • Petrini, C.1    Gainotti, S.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.