메뉴 건너뛰기




Volumn 80, Issue 6, 2013, Pages 583-589

Can outcomes in Duchenne muscular dystrophy be improved by public reporting of data?

Author keywords

[No Author keywords available]

Indexed keywords

CORTICOSTEROID;

EID: 84873675018     PISSN: 00283878     EISSN: 1526632X     Source Type: Journal    
DOI: 10.1212/WNL.0b013e318282334e     Document Type: Review
Times cited : (19)

References (35)
  • 2
    • 70350046640 scopus 로고    scopus 로고
    • Prevalence of Duchenne/Becker muscular dystrophy among males aged 5-24 years: Four states 2007
    • Center for Disease Control and Prevention (CDC)
    • Center for Disease Control and Prevention (CDC). Prevalence of Duchenne/Becker muscular dystrophy among males aged 5-24 years: four states, 2007. MMWR Morb Mortal Wkly Rep 2009;58:1119-1122.
    • (2009) MMWR Morb Mortal Wkly Rep , vol.58 , pp. 1119-1122
  • 3
    • 0026344234 scopus 로고
    • Long-term benefit from prednisone therapy in Duchenne muscular dystrophy
    • Fenichel GM, Florence JM, Pestronk A, et al. Long-term benefit from prednisone therapy in Duchenne muscular dystrophy. Neurology 1991;41:1874-1877.
    • (1991) Neurology , vol.41 , pp. 1874-1877
    • Fenichel, G.M.1    Florence, J.M.2    Pestronk, A.3
  • 4
    • 72149108443 scopus 로고    scopus 로고
    • Diagnosis and management of duchenne muscular dystrophy part 1: Diagnosis and pharmacological and psychosocial management
    • Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 1: diagnosis, and pharmacological and psychosocial management. Lancet Neurol 2010;9;77-93.
    • (2010) Lancet Neurol , vol.9 , pp. 77-93
    • Bushby, K.1    Finkel, R.2    Birnkrant, D.J.3
  • 5
    • 76549130473 scopus 로고    scopus 로고
    • Diagnosis and management of duchenne muscular dystrophy part 2: Implementation of multidisciplinary care
    • Bushby K, Finkel R, Birnkrant DJ, et al. Diagnosis and management of Duchenne muscular dystrophy, part 2: implementation of multidisciplinary care. Lancet Neurol 2010;9:177-189.
    • (2010) Lancet Neurol , vol.9 , pp. 177-189
    • Bushby, K.1    Finkel, R.2    Birnkrant, D.J.3
  • 7
    • 78650186613 scopus 로고    scopus 로고
    • Use of cortico-steroids in a population based cohort of boys with Duchenne and Becker muscular dystrophy
    • Matthews DJ, James KA, Miller LA, et al. Use of cortico-steroids in a population based cohort of boys with Duchenne and Becker muscular dystrophy. J Child Neu-rol 2010;25:1319-1324.
    • (2010) J Child Neu-rol , vol.25 , pp. 1319-1324
    • Matthews, D.J.1    James, K.A.2    Miller, L.A.3
  • 10
    • 77952420292 scopus 로고    scopus 로고
    • Improving the quality of care for patients with cystic fibrosis
    • Schechter MS, Gutierrez HH. Improving the quality of care for patients with cystic fibrosis. Curr Opin Pediatr 2010;22:296-301.
    • (2010) Curr Opin Pediatr , vol.22 , pp. 296-301
    • Schechter, M.S.1    Gutierrez, H.H.2
  • 11
    • 25144516833 scopus 로고    scopus 로고
    • Improving subspecialty healthcare: Lessons from cystic fibrosis
    • Schechter MS, Margolis P. Improving subspecialty healthcare: lessons from cystic fibrosis. J Pediatr 2005;147:295-301.
    • (2005) J Pediatr , vol.147 , pp. 295-301
    • Schechter, M.S.1    Margolis, P.2
  • 12
    • 81555201440 scopus 로고    scopus 로고
    • A story of success: Continuous quality improvement in cystic fibrosis care in the usa
    • Quon BS, Goss C. A story of success: continuous quality improvement in cystic fibrosis care in the USA. Thorax 2011;66:1106-1108.
    • (2011) Thorax , vol.66 , pp. 1106-1108
    • Quon, B.S.1    Goss, C.2
  • 13
    • 56249132492 scopus 로고    scopus 로고
    • Patient registry analyses: Seize the data, but caveat lector
    • Schechter MS. Patient registry analyses: seize the data, but caveat lector. J Pediatr 2008;153:733-755.
    • (2008) J Pediatr , vol.153 , pp. 733-755
    • Schechter, M.S.1
  • 14
    • 84855168553 scopus 로고    scopus 로고
    • Cystic Fibrosis Foundation Patent Registry Accessed February 7, 2012
    • Cystic Fibrosis Foundation Patent Registry. Annual data report 2010. Available at: http://www.cff.org/UploadedFiles/LivingWithCF/CareCenterNetwork/ PatientRegistry/2010-Patient-Registry-Report.pdf. Accessed February 7, 2012.
    • Annual Data Report 2010
  • 16
    • 19944427852 scopus 로고    scopus 로고
    • Practice parameter: Corticosteroid treatment of Duchenne dystrophy: Report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society
    • Moxley RT III, Ashwal S, Pandya S, et al. Practice parameter: corticosteroid treatment of Duchenne dystrophy: report of the Quality Standards Subcommittee of the American Academy of Neurology and the Practice Committee of the Child Neurology Society. Neurology 2005;64:13-20.
    • (2005) Neurology , vol.64 , pp. 13-20
    • Moxley III, R.T.1    Ashwal, S.2    Pandya, S.3
  • 17
    • 80155123446 scopus 로고    scopus 로고
    • Identification of research gaps from evidence-based guidelines: A pilot study in cystic fibrosis
    • Robinson KA, Saldanha IJ, Mckoy NA. Identification of research gaps from evidence-based guidelines: a pilot study in cystic fibrosis. Int J Technol Asses 2011;27:247-252.
    • (2011) Int J Technol Asses , vol.27 , pp. 247-252
    • Robinson, K.A.1    Saldanha, I.J.2    McKoy, N.A.3
  • 18
    • 84873696600 scopus 로고    scopus 로고
    • Accessed February 7, 2012
    • Cystic Fibrosis Care Guidelines. Available at: http://www.cff.org/ treatments/CFCareGuidelines/. Accessed February 7, 2012.
    • Cystic Fibrosis Care Guidelines
  • 19
    • 27144479427 scopus 로고    scopus 로고
    • Development and validation of the Cystic Fibrosis Questionnaire in the United States: A health related qual-ity-of-life measure for cystic fibrosis
    • Quittner AL, Buu A, Messer MA, Modi AC, Watrous M. Development and validation of The Cystic Fibrosis Questionnaire in the United States: a health related qual-ity-of-life measure for cystic fibrosis. Chest 2005;128:2347-2354.
    • (2005) Chest , vol.128 , pp. 2347-2354
    • Quittner, A.L.1    Buu, A.2    Messer, M.A.3    Modi, A.C.4    Watrous, M.5
  • 21
    • 80052840993 scopus 로고    scopus 로고
    • Cystic Fibrosis Foundation Accessed February 7, 2012
    • Cystic Fibrosis Foundation. 2010 annual report. Available at: http://www.cff.org/UploadedFiles/aboutCFFoundation/AnnualReport/ 2010-Annual-Report.pdf. Accessed February 7, 2012.
    • 2010 Annual Report
  • 22
    • 34249099687 scopus 로고    scopus 로고
    • Managing Duchenne muscular dystrophy: The additive effect of spinal surgery and home nocturnal ventilation in improving survival
    • Eagle M, Bourke J, Bullock R, et al. Managing Duchenne muscular dystrophy: the additive effect of spinal surgery and home nocturnal ventilation in improving survival. Neuromuscul Disord 2007;17:470-475.
    • (2007) Neuromuscul Disord , vol.17 , pp. 470-475
    • Eagle, M.1    Bourke, J.2    Bullock, R.3
  • 23
    • 0036895043 scopus 로고    scopus 로고
    • Survival in Duchenne muscular dystrophy: Improvements in life expectancy since 1967 and the impact of home nocturnal ventilation
    • Eagle M, Baudouin SV, Chandler C, et al. Survival in Duchenne muscular dystrophy: improvements in life expectancy since 1967 and the impact of home nocturnal ventilation. Neuromuscul Disord 2002;12:926-929.
    • (2002) Neuromuscul Disord , vol.12 , pp. 926-929
    • Eagle, M.1    Baudouin, S.V.2    Chandler, C.3
  • 24
    • 77956325548 scopus 로고    scopus 로고
    • Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): Case definitions in surveillance for childhood-onset Duchenne/Becker muscular dystrophy
    • Mathews KD, Cunniff C, Kantamneni JR, et al. Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): case definitions in surveillance for childhood-onset Duchenne/Becker muscular dystrophy. J Child Neurol 2010;25:1089-1102.
    • (2010) J Child Neurol , vol.25 , pp. 1089-1102
    • Mathews, K.D.1    Cunniff, C.2    Kantamneni, J.R.3
  • 25
    • 33751174484 scopus 로고    scopus 로고
    • The Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): Surveillance methodology: Birth defects research (part A)
    • Miller LA, Romitti PA, Cunniff C, et al. The Muscular Dystrophy Surveillance Tracking and Research Network (MD STARnet): surveillance methodology: birth defects research (part A). Clin Mol Technol 2006;76:793-797.
    • (2006) Clin Mol Technol , vol.76 , pp. 793-797
    • Miller, L.A.1    Romitti, P.A.2    Cunniff, C.3
  • 26
    • 70349599869 scopus 로고    scopus 로고
    • Collaborating to bring new therapies to the patient: The TREAT-NMD model
    • Bushby K, Lynn S, Straub V. Collaborating to bring new therapies to the patient: the TREAT-NMD model. Acta Myo 2009;28:12-15.
    • (2009) Acta Myo , vol.28 , pp. 12-15
    • Bushby, K.1    Lynn, S.2    Straub, V.3
  • 27
    • 84873619703 scopus 로고    scopus 로고
    • Charter for TREAT-NMD patient database/registry Accessed February 7, 2012
    • Charter for TREAT-NMD patient database/registry. Available at: http://www.treat-nmd.eu/downloads/file/registries-toolkit/charter-treat-nmd- global-database- approved.pdf. Accessed February 7, 2012.
  • 29
    • 84873654275 scopus 로고    scopus 로고
    • CARE-NMD Accessed February 7, 2012
    • CARE-NMD. Available at: http://en.care-nmd.eu/. Accessed February 7, 2012.
  • 30
    • 84873649351 scopus 로고    scopus 로고
    • DuchenneConnect Accessed February 7, 2012
    • DuchenneConnect. Available at: https://www.duchenneconnect. org/. Accessed February 7, 2012.
  • 31
    • 84873679726 scopus 로고    scopus 로고
    • DuchenneConnect registry report [Internet]. Version 17
    • Accessed March 30, 2012
    • Rangel V, Martin AS, Peay HL. DuchenneConnect registry report [Internet]. Version 17. PLoS currents: Muscular Dystrophy. Available at: http://knol.google.com/k/vanessa-rangel/duchenneconnect-registry-report/ 3c8kwqirmpdbh/3. Accessed March 30, 2012.
    • PLoS Currents: Muscular Dystrophy
    • Rangel, V.1    Martin, A.S.2    Peay, H.L.3
  • 32
    • 84873626602 scopus 로고    scopus 로고
    • Muscular Dystrophy Association Accessed March 30, 2012
    • Muscular Dystrophy Association. Available at: http://www.mdausa.org/. Accessed March 30, 2012.
  • 33
    • 84873627165 scopus 로고    scopus 로고
    • Muscular Dystrophy Association Clinical Conference Information Accessed on March 30, 2012
    • Muscular Dystrophy Association Clinical Conference Information. Available at: http://www.mdausa.org/research/national-conferences/2012-clinical- conference/information. htm. Accessed on March 30, 2012.
  • 34
    • 77957267994 scopus 로고    scopus 로고
    • Widening gap in age at muscular dystrophy-associated death between blacks and whites 1986-2005
    • Kenneson A, Vatave A, Finkel R. Widening gap in age at muscular dystrophy-associated death between blacks and whites, 1986-2005. Neurology 2010;75: 982-989.
    • (2010) Neurology , vol.75 , pp. 982-989
    • Kenneson, A.1    Vatave, A.2    Finkel, R.3
  • 35
    • 81155161042 scopus 로고    scopus 로고
    • Disparities in the diagnostic process of duchenne and becker muscular dystrophy
    • Holtzer C, Meaney FJ, Andrews J, et al. Disparities in the diagnostic process of Duchenne and Becker muscular dystrophy. Genet Med 2011;13:942-947.
    • (2011) Genet Med , vol.13 , pp. 942-947
    • Holtzer, C.1    Meaney, F.J.2    Andrews, J.3


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.