메뉴 건너뛰기




Volumn 17, Issue 3-4, 2012, Pages 167-172

Rare disease patient groups as clinical researchers

(1)  Polich, Ginger R a  

a NONE   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTEMISININ; MUMPS VACCINE; PLANT MEDICINAL PRODUCT;

EID: 84856483335     PISSN: 13596446     EISSN: 18785832     Source Type: Journal    
DOI: 10.1016/j.drudis.2011.09.020     Document Type: Review
Times cited : (19)

References (58)
  • 1
    • 57649109461 scopus 로고    scopus 로고
    • Clinical research for rare disease: Opportunities, challenges, and solutions
    • R.C. Griggs Clinical research for rare disease: opportunities, challenges, and solutions Mol. Genet. Metab. 96 2009 20 26
    • (2009) Mol. Genet. Metab. , vol.96 , pp. 20-26
    • Griggs, R.C.1
  • 2
    • 33745172773 scopus 로고    scopus 로고
    • A journey of hope: Lessons learned from studies on rare diseases and orphan drugs
    • DOI 10.1111/j.1365-2796.2006.01666.x
    • M. Wastfelt A journey of hope: lessons learned from studies on rare diseases and orphan drugs J. Intern. Med. 260 2006 1 10 (Pubitemid 43894064)
    • (2006) Journal of Internal Medicine , vol.260 , Issue.1 , pp. 1-10
    • Wastfelt, M.1    Fadeel, B.2    Henter, J.-I.3
  • 3
    • 66249085050 scopus 로고    scopus 로고
    • Patient groups and health movements
    • O. Amsterdamska, 3rd edn MIT Press
    • S.G. Epstein Patient groups and health movements O. Amsterdamska, The Handbook of Science and Technology Studies 3rd edn 2007 MIT Press 499 539
    • (2007) The Handbook of Science and Technology Studies , pp. 499-539
    • Epstein, S.G.1
  • 4
    • 75149164701 scopus 로고    scopus 로고
    • The role of patient advocacy organisations in neuromuscular disease R&D - The case of the Dutch neuromuscular disease association VSN
    • W. Boon, and R. Broekgaarden The role of patient advocacy organisations in neuromuscular disease R&D - the case of the Dutch neuromuscular disease association VSN Neuromuscul. Disord. 20 2010 148 151
    • (2010) Neuromuscul. Disord. , vol.20 , pp. 148-151
    • Boon, W.1    Broekgaarden, R.2
  • 5
    • 44849116195 scopus 로고    scopus 로고
    • Empowerment of patients: Lessons from the rare diseases community
    • DOI 10.1016/S0140-6736(08)60875-2, PII S0140673608608752
    • S. Ayme Empowerment of patients: lessons from the rare disease community Lancet 371 2008 2048 2051 (Pubitemid 351802281)
    • (2008) The Lancet , vol.371 , Issue.9629 , pp. 2048-2051
    • Ayme, S.1    Kole, A.2    Groft, S.3
  • 6
    • 0141570662 scopus 로고    scopus 로고
    • The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation
    • DOI 10.1016/S0277-9536(03)00084-4
    • V. Rabeharisoa The struggle against neuromuscular disease in France and the emergence of the 'partnership model' of patient organisation Soc. Sci. Med. 57 2003 2127 2136 (Pubitemid 37153153)
    • (2003) Social Science and Medicine , vol.57 , Issue.11 , pp. 2127-2136
    • Rabeharisoa, V.1
  • 8
    • 2442507664 scopus 로고    scopus 로고
    • The first generation of e-patients
    • T. Ferguson, and G. Frydman The first generation of e-patients BMJ 328 2004 1148 1149 (Pubitemid 38626572)
    • (2004) British Medical Journal , vol.328 , Issue.7449 , pp. 1148-1149
    • Ferguson, T.1    Frydman, G.2
  • 9
    • 33846578656 scopus 로고    scopus 로고
    • What I've learned from E-patients
    • D. Hoch, and T. Ferguson What I've learned from E-patients PLoS Med. 2 2005 E206
    • (2005) PLoS Med. , vol.2 , pp. 206
    • Hoch, D.1    Ferguson, T.2
  • 10
    • 0036217193 scopus 로고    scopus 로고
    • The involvement of patients' associations in research
    • The Knowledge Society
    • V. Rabeharisoa, and M. Callon The involvement of patients' associations in research Int. Soc. Sci. J. 171 2002 57 65 (Pubitemid 34276433)
    • (2002) International Social Science Journal , vol.54 , Issue.171 , pp. 57-65
    • Rabeharisoa, V.1    Callon, M.2
  • 11
    • 16244396101 scopus 로고    scopus 로고
    • The experiential knowledge of patients: A new resource for biomedical research?
    • DOI 10.1016/j.socscimed.2004.11.023
    • J. Caron-Flinterman The experiential knowledge of patients: a new resource for biomedical research? Soc. Sci. Med. 60 2005 2575 2584 (Pubitemid 40462381)
    • (2005) Social Science and Medicine , vol.60 , Issue.11 , pp. 2575-2584
    • Caron-Flinterman, J.F.1    Broerse, J.E.W.2    Bunders, J.F.G.3
  • 12
    • 0037791817 scopus 로고    scopus 로고
    • Research 'in the wild' and the shaping of new social identities
    • M. Callon, and V. Rabeharisoa Research 'in the wild' and the shaping of new social identities Technol. Soc. 25 2003 189 204
    • (2003) Technol. Soc. , vol.25 , pp. 189-204
    • Callon, M.1    Rabeharisoa, V.2
  • 13
    • 2642546468 scopus 로고    scopus 로고
    • Involving consumers in research and development agenda setting for the NHS: Developing an evidence-based approach
    • S. Oliver Involving consumers in research and development agenda setting for the NHS: developing an evidence-based approach Health Technol. Assess. 8 2004 1 148
    • (2004) Health Technol. Assess. , vol.8 , pp. 1-148
    • Oliver, S.1
  • 17
    • 13144271492 scopus 로고    scopus 로고
    • Democracy, expertise, and AIDS treatment activism
    • D.L. Kleinman, State University of New York Press
    • S. Epstein Democracy, expertise, and AIDS treatment activism D.L. Kleinman, Science, Technology, and Democracy 2005 State University of New York Press
    • (2005) Science, Technology, and Democracy
    • Epstein, S.1
  • 18
    • 0032601588 scopus 로고    scopus 로고
    • Public advocacy and allocation of federal funds for biomedical research
    • R. Dresser Public advocacy and allocation of federal funds for biomedical research Milbank Q. 77 1999 257 274
    • (1999) Milbank Q. , vol.77 , pp. 257-274
    • Dresser, R.1
  • 19
    • 84856447909 scopus 로고
    • U.S. Congress Office of Technology Assessment
    • Pharmaceutical R&D: Costs, Risks and Rewards 1993 U.S. Congress Office of Technology Assessment http://www.fas.org/ota/reports/9336.pdf
    • (1993) Pharmaceutical R&D: Costs, Risks and Rewards
  • 20
    • 71749103033 scopus 로고    scopus 로고
    • Translation of rare disease research into orphan drug development: Disease matters
    • H.E. Heemstra Translation of rare disease research into orphan drug development: disease matters Drug Discov. Today 14 2009 1166 1173
    • (2009) Drug Discov. Today , vol.14 , pp. 1166-1173
    • Heemstra, H.E.1
  • 21
    • 69549128318 scopus 로고    scopus 로고
    • Patient involvement in health research: A contribution to a systematic review on the effectiveness of treatments for degenerative ataxias
    • P. Serrano-Aguilar Patient involvement in health research: a contribution to a systematic review on the effectiveness of treatments for degenerative ataxias Soc. Sci. Med. 69 2009 920 925
    • (2009) Soc. Sci. Med. , vol.69 , pp. 920-925
    • Serrano-Aguilar, P.1
  • 22
    • 0037157590 scopus 로고    scopus 로고
    • Drug development for neglected diseases: A deficient market and a public-health policy failure
    • DOI 10.1016/S0140-6736(02)09096-7
    • P. Trouiller Drug development for neglected diseases: a deficient market and a public-health policy failure Lancet 359 2002 2188 2194 (Pubitemid 34694030)
    • (2002) Lancet , vol.359 , Issue.9324 , pp. 2188-2194
    • Trouiller, P.1    Olliaro, P.2    Torreele, E.3    Orbinski, J.4    Laing, R.5    Ford, N.6
  • 23
    • 41549120233 scopus 로고    scopus 로고
    • The role of users in innovation in the pharmaceutical industry
    • R.E.H.M. Smits, and W.P.C. Boon The role of users in innovation in the pharmaceutical industry Drug Discov. Today 13 2008 353 359
    • (2008) Drug Discov. Today , vol.13 , pp. 353-359
    • Smits, R.E.H.M.1    Boon, W.P.C.2
  • 25
    • 2442446970 scopus 로고    scopus 로고
    • The citizen scientists
    • S. Solovich The citizen scientists WIRED Vol. 9 2001
    • (2001) WIRED , vol.9 VOL.
    • Solovich, S.1
  • 26
    • 44649119874 scopus 로고    scopus 로고
    • Social uses of personal health information within PatientsLikeMe, an online patient community: What can happen when patients have access to one another's data
    • J.H. Frost, and M.P. Massagli Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data J. Med. Internet Res. 10 2008 E15
    • (2008) J. Med. Internet Res. , vol.10 , pp. 15
    • Frost, J.H.1    Massagli, M.P.2
  • 29
    • 0034605762 scopus 로고    scopus 로고
    • Online patient-helpers and physicians working together: A new partnership for high quality health care
    • T. Ferguson Online patient-helpers and physicians working together: a new partnership for high quality health care BMJ 321 2000 1129 1132
    • (2000) BMJ , vol.321 , pp. 1129-1132
    • Ferguson, T.1
  • 30
    • 78751532787 scopus 로고    scopus 로고
    • Generating sociability to drive science: Patient advocacy organizations and genetics research
    • A. Panofsky Generating sociability to drive science: patient advocacy organizations and genetics research Soc. Stud. Sci. 41 2011 31 57
    • (2011) Soc. Stud. Sci. , vol.41 , pp. 31-57
    • Panofsky, A.1
  • 31
    • 70350037763 scopus 로고    scopus 로고
    • The power of social networking in medicine
    • C.A. Brownstein The power of social networking in medicine Nat. Biotechnol. 27 2009 888 890
    • (2009) Nat. Biotechnol. , vol.27 , pp. 888-890
    • Brownstein, C.A.1
  • 32
    • 77950187284 scopus 로고    scopus 로고
    • Evaluation of self-reported progression and correlation of imatinib dose to survival in patients with metastatic gatrointestinal stromal tumors: An open cohort study
    • J. Call Evaluation of self-reported progression and correlation of imatinib dose to survival in patients with metastatic gatrointestinal stromal tumors: an open cohort study J. Gastrointest. Cancer 41 2010 60 70
    • (2010) J. Gastrointest. Cancer , vol.41 , pp. 60-70
    • Call, J.1
  • 33
    • 0029367785 scopus 로고
    • The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials
    • S. Epstein The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials Sci. Technol. Human Values 20 1995 408 437
    • (1995) Sci. Technol. Human Values , vol.20 , pp. 408-437
    • Epstein, S.1
  • 35
    • 0025878999 scopus 로고
    • Anecdote and objectivity
    • J. Herman Anecdote and objectivity J. Clin. Epidemiol. 44 1991 725 726
    • (1991) J. Clin. Epidemiol. , vol.44 , pp. 725-726
    • Herman, J.1
  • 36
    • 1842301405 scopus 로고
    • The negligent treatment of medical anecdote
    • W. Pickering The negligent treatment of medical anecdote BMJ 304 1992 1516
    • (1992) BMJ , vol.304 , pp. 1516
    • Pickering, W.1
  • 37
    • 77949407113 scopus 로고    scopus 로고
    • The missing voice of patients in drug-safety reporting
    • E. Basch The missing voice of patients in drug-safety reporting N. Engl. J. Med. 362 2010 865 869
    • (2010) N. Engl. J. Med. , vol.362 , pp. 865-869
    • Basch, E.1
  • 39
    • 41549165543 scopus 로고    scopus 로고
    • Impact of non-profit organization on drug discovery: Opportunities, gaps, solutions
    • A. Matter, and T.H. Keller Impact of non-profit organization on drug discovery: opportunities, gaps, solutions Drug Discov. Today 13 2008 347 352
    • (2008) Drug Discov. Today , vol.13 , pp. 347-352
    • Matter, A.1    Keller, T.H.2
  • 40
    • 25144518364 scopus 로고    scopus 로고
    • Financial anatomy of biomedical research
    • H. Moses III Financial anatomy of biomedical research JAMA 294 2005 1333 1342
    • (2005) JAMA , vol.294 , pp. 1333-1342
    • Moses Iii, H.1
  • 42
    • 33847024950 scopus 로고    scopus 로고
    • Researching complementary and alternative treatments - The gatekeepers are not at home
    • V.F. Fonnebo Researching complementary and alternative treatments - the gatekeepers are not at home BMC Med. Res. Methodol. 7 2007 7
    • (2007) BMC Med. Res. Methodol. , vol.7 , pp. 7
    • Fonnebo, V.F.1
  • 43
    • 0000891762 scopus 로고
    • Understanding science from the perspective of the sociology of scientific knowledge: An overview
    • S. Yearly Understanding science from the perspective of the sociology of scientific knowledge: an overview Public Underst. Sci. 3 1994 245 258
    • (1994) Public Underst. Sci. , vol.3 , pp. 245-258
    • Yearly, S.1
  • 46
    • 77957277584 scopus 로고    scopus 로고
    • Identifying unpredicted drug benefit through query of patient experiential knowledge: A proof of concept web-based system
    • J. Pulley Identifying unpredicted drug benefit through query of patient experiential knowledge: a proof of concept web-based system Clin. Transl. Sci. 3 2010 98 103
    • (2010) Clin. Transl. Sci. , vol.3 , pp. 98-103
    • Pulley, J.1
  • 47
    • 77955887051 scopus 로고    scopus 로고
    • The need to act a little more 'scientific': Biomedical researchers investigating complementary and alternative medicine
    • G. Polich The need to act a little more 'scientific': biomedical researchers investigating complementary and alternative medicine Sociol. Health Illn. 32 2010 106 122
    • (2010) Sociol. Health Illn. , vol.32 , pp. 106-122
    • Polich, G.1
  • 49
    • 14944383798 scopus 로고    scopus 로고
    • The evolving role of natural products in drug discovery
    • DOI 10.1038/nrd1657
    • F.E. Koehn, and G.T. Carter The evolving role of natural products in drug discovery Nat. Rev. Drug Discov. 4 2005 206 220 (Pubitemid 40372555)
    • (2005) Nature Reviews Drug Discovery , vol.4 , Issue.3 , pp. 206-220
    • Koehn, F.E.1    Carter, G.T.2
  • 50
    • 67650436176 scopus 로고    scopus 로고
    • Drug discovery and natural products: End of an era of an endless fronteir?
    • J.W. Li, and J.C. Vederas Drug discovery and natural products: end of an era of an endless fronteir? Science 325 2009 161 165
    • (2009) Science , vol.325 , pp. 161-165
    • Li, J.W.1    Vederas, J.C.2
  • 51
    • 43049183607 scopus 로고    scopus 로고
    • Natural products as a robust source of new drugs and drug leads: Past successes and present day issues
    • G.M. Rishton Natural products as a robust source of new drugs and drug leads: past successes and present day issues Am. J. Cardiol. 101 2008 43D 49D
    • (2008) Am. J. Cardiol. , vol.101
    • Rishton, G.M.1
  • 52
    • 0027278761 scopus 로고    scopus 로고
    • Estrogen metabolism and human papillomavirus-induced tumors of the larynx: Chemo-prophylaxis with indole-3-carbinol
    • Newfield
    • Newfield Estrogen metabolism and human papillomavirus-induced tumors of the larynx: chemo-prophylaxis with indole-3-carbinol Anticancer Res. 13 1996 337 342
    • (1996) Anticancer Res. , vol.13 , pp. 337-342
  • 54
    • 2942612768 scopus 로고    scopus 로고
    • Indole-3-carbinol for recurrent respiratory papillomatosis: Long-term results
    • DOI 10.1016/j.jvoice.2003.05.005, PII S0892199703001620
    • C.A. Rosen, and P.C. Bryson Indole-3-carbinol for recurrent respiratory papillomatosis: long-term results J. Voice 18 2004 248 253 (Pubitemid 38757553)
    • (2004) Journal of Voice , vol.18 , Issue.2 , pp. 248-253
    • Rosen, C.A.1    Bryson, P.C.2
  • 56
    • 34047136753 scopus 로고    scopus 로고
    • Cruciferous vegetables and human cancer risk: epidemiologic evidence and mechanistic basis
    • DOI 10.1016/j.phrs.2007.01.009, PII S1043661807000321, Nutritional Pharmacology
    • J.V. Higdon Cruciferous vegetables and human cancer risk: epidemiologic evidence and mechanistic basis Pharmacol. Res. 55 2007 224 236 (Pubitemid 46518152)
    • (2007) Pharmacological Research , vol.55 , Issue.3 , pp. 224-236
    • Higdon, J.V.1    Delage, B.2    Williams, D.E.3    Dashwood, R.H.4
  • 57
    • 70349586374 scopus 로고    scopus 로고
    • A controlled safety study of diindolylmethan in the immature rat model
    • A.P. Elackattu A controlled safety study of diindolylmethan in the immature rat model Larynogoscope 119 2009 1803 1808
    • (2009) Larynogoscope , vol.119 , pp. 1803-1808
    • Elackattu, A.P.1
  • 58
    • 33645761199 scopus 로고    scopus 로고
    • The natural chemopreventive compound indole-3-carbinol: State of the science
    • E.G. Rogan The natural chemopreventive compound indole-3-carbinol: state of the science In Vivo 20 2006 221 228
    • (2006) In Vivo , vol.20 , pp. 221-228
    • Rogan, E.G.1


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.