메뉴 건너뛰기




Volumn 54, Issue 3, 2011, Pages 220-224

Care for patients with ultra-rare disorders

Author keywords

Centres of expertise; E mail consulting; European community; Rare disorders; Support groups; Total exome sequencing; Ultra rare disorders; Virtual centres of expertise; Wiki

Indexed keywords

ARTICLE; CONSULTATION; HEALTH CARE POLICY; HUMAN; KNOWLEDGE; PATIENT CARE; PHENOTYPE; RARE DISEASE;

EID: 79955476462     PISSN: 17697212     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ejmg.2010.12.001     Document Type: Article
Times cited : (47)

References (20)
  • 1
    • 77952215843 scopus 로고    scopus 로고
    • Patient participation as dialogue: setting research agendas
    • Abma T.A., Broerse J.E. Patient participation as dialogue: setting research agendas. Health Expect. 2010, 13:160-173.
    • (2010) Health Expect. , vol.13 , pp. 160-173
    • Abma, T.A.1    Broerse, J.E.2
  • 3
    • 44849116195 scopus 로고    scopus 로고
    • Empowerment of patients: lessons from the rare diseases
    • Ayme S., Kole A., Groft S. Empowerment of patients: lessons from the rare diseases. Lancet 2008, 371(2048):2051.
    • (2008) Lancet , vol.371 , Issue.2048 , pp. 2051
    • Ayme, S.1    Kole, A.2    Groft, S.3
  • 6
    • 68349116324 scopus 로고    scopus 로고
    • Building quality in health - the need for clinical researchers
    • Brown G.V., Sorrell T.C. Building quality in health - the need for clinical researchers. MJA 2009, 190:627-629.
    • (2009) MJA , vol.190 , pp. 627-629
    • Brown, G.V.1    Sorrell, T.C.2
  • 8
    • 0034793186 scopus 로고    scopus 로고
    • ECare and eHealth: the internet meets health care
    • Greenes R.A. eCare and eHealth: the internet meets health care. J. Med. Pract. Manage. 2001, 17:106-108.
    • (2001) J. Med. Pract. Manage. , vol.17 , pp. 106-108
    • Greenes, R.A.1
  • 10
    • 75749103383 scopus 로고    scopus 로고
    • Rate, molecular spectrum, and consequences of human mutation
    • Lynch M. Rate, molecular spectrum, and consequences of human mutation. Proc. Natl. Acad. Sci. U.S.A. 2010, 107:961-968.
    • (2010) Proc. Natl. Acad. Sci. U.S.A. , vol.107 , pp. 961-968
    • Lynch, M.1
  • 11
    • 0347003513 scopus 로고    scopus 로고
    • The burden of genetic disease on inpatient care in a children's hospital
    • McCandless S.E., Brunger J.W., Cassidy S.B. The burden of genetic disease on inpatient care in a children's hospital. Am. J. Hum. Genet. 2004, 74:121-127.
    • (2004) Am. J. Hum. Genet. , vol.74 , pp. 121-127
    • McCandless, S.E.1    Brunger, J.W.2    Cassidy, S.B.3
  • 12
    • 40649127477 scopus 로고    scopus 로고
    • Genetic evaluation of intellectual disabilities
    • Moeschler J.B. Genetic evaluation of intellectual disabilities. Semin. Pediatr. Neurol. 2008, 15:2-9.
    • (2008) Semin. Pediatr. Neurol. , vol.15 , pp. 2-9
    • Moeschler, J.B.1
  • 13
    • 0038601810 scopus 로고    scopus 로고
    • Malpractice liability for informal consultations
    • Olick R.S., Bergus G.R. Malpractice liability for informal consultations. Fam. Med. 2003, 35:476-481.
    • (2003) Fam. Med. , vol.35 , pp. 476-481
    • Olick, R.S.1    Bergus, G.R.2
  • 15
    • 33747173377 scopus 로고    scopus 로고
    • Mutation, selection and the future of human evolution
    • Reed F.A., Aquadro C.F. Mutation, selection and the future of human evolution. Trends Genet. 2006, 22:479-484.
    • (2006) Trends Genet. , vol.22 , pp. 479-484
    • Reed, F.A.1    Aquadro, C.F.2
  • 16
    • 34547817696 scopus 로고    scopus 로고
    • New perspectives for the elucidation of genetic disorders
    • Ropers H.H. New perspectives for the elucidation of genetic disorders. Am. J. Hum. Genet. 2007, 81:199-207.
    • (2007) Am. J. Hum. Genet. , vol.81 , pp. 199-207
    • Ropers, H.H.1
  • 19
    • 79955472057 scopus 로고    scopus 로고
    • Biobanken en patiëntenorganisaties: Een (international) perspectief. [Biobanking and patient support groups: an (inter_national perspective)] Medisch Contact [in the press].
    • T. Van der Valk, C. Smit. Biobanken en patiëntenorganisaties: Een (international) perspectief. [Biobanking and patient support groups: an (inter_national perspective)] Medisch Contact 2010 [in the press].
    • (2010)
    • Van der Valk, T.1    Smit, C.2


* 이 정보는 Elsevier사의 SCOPUS DB에서 KISTI가 분석하여 추출한 것입니다.