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1
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National Cancer Institute, Bethesda. Available at Accessed 18 Nov 2013
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Howlader N, Noone AM, et al, editors. SEER cancer statistics review, 1975-2010. National Cancer Institute, Bethesda. Available at http://seer.cancer.gov/csr/1975-2010/. Accessed 18 Nov 2013.
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SEER Cancer Statistics Review, 1975-2010
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Howlader, N.1
Noone, A.M.2
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2
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84868023931
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CBTRUS statistical report: Primary brain and central nervous system tumors diagnosed in the United States in 2005-2009
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doi:10.1093/neuonc/nos218. Understanding brain tumor burden is important to comprehend the impact of the disease and how it compares with other rare and not so rare diseases
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• Dolecek TA, Propp JM, Stroup NE, Kruchko C. CBTRUS statistical report: primary brain and central nervous system tumors diagnosed in the United States in 2005-2009. Neuro Oncol. 2012;14 Suppl 5:v1-49. doi:10.1093/neuonc/ nos218. Understanding brain tumor burden is important to comprehend the impact of the disease and how it compares with other rare and not so rare diseases.
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Neuro Oncol
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Dolecek, T.A.1
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Kruchko, C.4
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3
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84863724336
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The future of the cancer prevention workforce: Why health literacy, advocacy, and stakeholder collaborations matter
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Pages 168-169 highlight how advocacy impacts policy development in cancer prevention
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• Sulik G, Cameron C, Chamberlain R. The future of the cancer prevention workforce: why health literacy, advocacy, and stakeholder collaborations matter. J Cancer Educ. 2012;27(2):165-72. Pages 168-169 highlight how advocacy impacts policy development in cancer prevention.
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J Cancer Educ
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Sulik, G.1
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An essential partnership: Patient advocates and cooperative groups
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Semin Oncol
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Collyar, D.1
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The evolving role of COPD patient advocacy organizations for COPD
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The author reveals the programmatic structure of the COPD Foundation within the areas of education, public policy, and research
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• Walsh J. The evolving role of COPD patient advocacy organizations for COPD. J Thorac Dis. 2012;4(6):676-80. The author reveals the programmatic structure of the COPD Foundation within the areas of education, public policy, and research.
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J Thorac Dis
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Walsh, J.1
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The role of patient advocacy organizations in shaping genomic science
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This is an overview the evolution of the definition of patient advocacy organizations. The authors explore the relationships between patient advocacy groups and researchers and how they might change in the face of increasing importance of genomic science
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•• Koay P, Sharp R. The role of patient advocacy organizations in shaping genomic science. Annu Rev Genomics Hum Genet. 2013;14:570-95. This is an overview the evolution of the definition of patient advocacy organizations. The authors explore the relationships between patient advocacy groups and researchers and how they might change in the face of increasing importance of genomic science.
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(2013)
Annu Rev Genomics Hum Genet
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Koay, P.1
Sharp, R.2
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Policy and advocacy in the quest for effective translational breast care research
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La Fargue M. Policy and advocacy in the quest for effective translational breast care research. Breast. 2010;19(4):303-6.
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Breast
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La Fargue, M.1
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Advocacy organisations as partners in preeclampsia progress: Patient involvement improves outcomes
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The authors present a thorough analysis of the different roles that advocacy organizations play in the advancement of the health care system
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• Tsigas E, Magee L. Advocacy organisations as partners in preeclampsia progress: patient involvement improves outcomes. Best Practi Res Clin Obstet Gynaecol. 2011;25(4):523-36. The authors present a thorough analysis of the different roles that advocacy organizations play in the advancement of the health care system.
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Best Practi Res Clin Obstet Gynaecol
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Tsigas, E.1
Magee, L.2
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The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation
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DOI 10.1016/S0277-9536(03)00084-4
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Rabeharisoa V. The struggle against neuromuscular diseases in France and the emergence of the "partnership model" of patient organisation. Soc Sci Med. 2003;57(11):2127-36. (Pubitemid 37153153)
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Social Science and Medicine
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Rabeharisoa, V.1
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The impact of parent advocacy groups, the Internet, and social networking on rare diseases: The IDEA League and IDEA League United Kingdom example
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This article highlights the broad scope of support services that advocacy groups can offer with evolving communication technologies, such as the Internet
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Black A, Baker M. The impact of parent advocacy groups, the Internet, and social networking on rare diseases: the IDEA League and IDEA League United Kingdom example. Epilepsia. 2011;52(Suppl s2):102-4. This article highlights the broad scope of support services that advocacy groups can offer with evolving communication technologies, such as the Internet.
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Epilepsia
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Black, A.1
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Advocacy groups and their role in rare diseases research
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Dunkle M, Pines W, Saltonstall PL. Advocacy groups and their role in rare diseases research. Adv Exp Med Biol. 2010;686:515-25.
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Adv Exp Med Biol
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The role of patient advocacy/parent support groups
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This article highlights the origins of patient advocacy groups. The author provides details on what types of tasks patient advocacy groups perform
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• Hall J. The role of patient advocacy/parent support groups. S Afr Med J. 2013;103(12):1020-2. This article highlights the origins of patient advocacy groups. The author provides details on what types of tasks patient advocacy groups perform.
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S Afr Med J
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Hall, J.1
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The role of patient advocacy organisations in neuromuscular disease R&D - The case of the Dutch neuromuscular disease association VSN
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Boon W, Broekgaarden R. The role of patient advocacy organisations in neuromuscular disease R&D - the case of the Dutch neuromuscular disease association VSN. Neuromusc Disord. 2010;20(2):148-51.
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Neuromusc Disord
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Boon, W.1
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84886953083
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Multifaceted roles of ultrarare and rare disease patients/parents in drug discovery
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This article highlights the role of patients and advocates in drug discovery and development. The authors present an alternative model for pharmaceutical research via patient advocacy channels
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•• Wood J, Sames L, Moore A, Ekins S. Multifaceted roles of ultrarare and rare disease patients/parents in drug discovery. Drug Discov Today. 2013;18(21):1043-51. This article highlights the role of patients and advocates in drug discovery and development. The authors present an alternative model for pharmaceutical research via patient advocacy channels.
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Drug Discov Today
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Wood, J.1
Sames, L.2
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Orphans find a home
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This special report provides a very detailed case study of how patients are able to impact their own treatment and in turn shape the future of the health care system. In addition, multiple areas of drug research are tied into one narrative: the business of drug development, the regulatory framework, and the ability of ptients to impact these domains
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•• Jarvis L. Orphans find a home. Chem Eng News. 2013;91(19):10-23. This special report provides a very detailed case study of how patients are able to impact their own treatment and in turn shape the future of the health care system. In addition, multiple areas of drug research are tied into one narrative: the business of drug development, the regulatory framework, and the ability of ptients to impact these domains.
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(2013)
Chem Eng News
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Jarvis, L.1
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84855973422
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Huntington's disease: Advocacy driving science
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This article reveals the history of researching Huntington's disease from the perspective of the patient and the researcher. In addition, the article shows the impact that one organization can have on the evolution of the science and development of treatments
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• Wexler N. Huntington's disease: advocacy driving science. Annu Rev Med. 2012;63:1-22. This article reveals the history of researching Huntington's disease from the perspective of the patient and the researcher. In addition, the article shows the impact that one organization can have on the evolution of the science and development of treatments.
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Annu Rev Med
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Wexler, N.1
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Tambuyzer E. Rare diseases, orphan drugs and their regulation: questions and misconceptions. Nat Rev Drug Discov. 2010;9(12):921-9.
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Nat Rev Drug Discov
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Semin Oncol Nurs
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Advocacy groups as research organizations: The PXE International example
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Terry S, Terry P, Rauen K, Uitto J, Bercovitch L. Advocacy groups as research organizations: the PXE International example. Nat Rev Genet. 2007;8(2):157-64. (Pubitemid 46122844)
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Terry, S.F.1
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Patient advocacy organizations: Institutional conflicts of interest, trust, and trustworthiness
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This article provides the definition of patient advocacy organizations
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• Rose S. Patient advocacy organizations: institutional conflicts of interest, trust, and trustworthiness. J Law Med Ethics. 2013;41(3):680-7. This article provides the definition of patient advocacy organizations.
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J Law Med Ethics
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Musella Foundation for Brain Tumor Research & Information. Musella Foundation. http://www.virtualtrials.com/musella.cfm(2013). Accessed 18 Dec 2013.
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Musella Foundation
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Accessed 16 Dec 2013
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The Brain Tumour Charity. The Brain Tumour Charity | home. http://www.thebraintumourcharity.org (2013). Accessed 16 Dec 2013.
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The Brain Tumour Charity | Home
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Accessed 16 Dec 2013
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Pediatric Brain Tumor Foundation. Pediatric Brain Tumor Foundation - homepage. http://www.curethekids.org (2013). Accessed 16 Dec 2013.
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Pediatric Brain Tumor Foundation - Homepage
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National Brain Tumor Society. National Brain Tumor Society. http://www.braintumor.org (2013). Accessed 16 Dec 2013.
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Science
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• Truog R, Kesselheim A, Joffe S. Paying patients for their tissue: the legacy of Henrietta Lacks. Science. 2012;337(6090):37-8. This article provides insight on the debate of property rights in human tissue.
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The problems with today's pharmaceutical business - An outsider's view
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• Kessel M. The problems with today's pharmaceutical business - an outsider's view. Nat Biotechnol. 2011;29(1):27-33.This article provides an overview of the drug development process and its limitations.
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Kessel, M.1
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• Baxter K, Horn E, Gal-Edd N, Zonno K, O'Leary J, Terry PF, et al. An end to the myth: there is no drug development pipeline. Sci Transl Med. 2013;5(171):1-4. The authors highlight why the current drug development models no longer work and provide an alternative "network" approach to fuel drug development.
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Generating sociability to drive science: Patient advocacy organizations and genetics research
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This article provides a social science perspective on how patient advocacy organizations engage other important resources in researching a treatment for a disease. The author introduces the concept of "sociability" as a tool that patient advocacy organizations can use to drive research
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•• Panofsky A. Generating sociability to drive science: patient advocacy organizations and genetics research. Soc Stud Sci. 2011;41(1): 31-57. This article provides a social science perspective on how patient advocacy organizations engage other important resources in researching a treatment for a disease. The author introduces the concept of "sociability" as a tool that patient advocacy organizations can use to drive research.
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Soc Stud Sci
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