-
2
-
-
78650358488
-
The quality of clinical practice guidelines over the last two decades: A systematic review of guideline appraisal studies
-
PMID: 21127089
-
Alonso-Coello P, Irfan A, Solà I, Gich I, Delgado-Noguera M, Rigau D, et al. The quality of clinical practice guidelines over the last two decades: a systematic review of guideline appraisal studies. Qual Saf Health Care. 2010; 19(6): e58. doi: 10.1136/qshc.2010.042077 PMID: 21127089
-
(2010)
Qual Saf Health Care
, vol.19
, Issue.6
, pp. e58
-
-
Alonso-Coello, P.1
Irfan, A.2
Solà, I.3
Gich, I.4
Delgado-Noguera, M.5
Rigau, D.6
-
3
-
-
85010018074
-
-
Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products Accessed 10 Dec
-
Regulation (EC) No 141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products. http://eur-lex.europa.eu/legal-content/CS/ALL/?uri=URISERV:l21167. Accessed 10 Dec 2015.
-
(2015)
-
-
-
4
-
-
85026274791
-
How reference networks develop, implement, and monitor guidelines
-
Kirschner J, Rodger S, Vry J, Gramsch K, Lochmüller H, Bushby K. How reference networks develop, implement, and monitor guidelines. Orphanet J Rare Dis. 2012; 7(Suppl 2): A14-A14.
-
(2012)
Orphanet J Rare Dis.
, vol.7
, pp. A14-A14
-
-
Kirschner, J.1
Rodger, S.2
Vry, J.3
Gramsch, K.4
Lochmüller, H.5
Bushby, K.6
-
5
-
-
85009945509
-
Methodology for production of best practice guidelines for rare diseases
-
Sejersen T, Del Giovane C, Filippini G, Leo CG, Meerpohl JJ, Mincarone P, et al. Methodology for production of best practice guidelines for rare diseases. Rare Dis Orphan Drugs. 2014; 1(1):10-19.
-
(2014)
Rare Dis Orphan Drugs
, vol.1
, Issue.1
, pp. 10-19
-
-
Sejersen, T.1
Del Giovane, C.2
Filippini, G.3
Leo, C.G.4
Meerpohl, J.J.5
Mincarone, P.6
-
6
-
-
85010017905
-
Clinical guidelines and practices: Examples from international collaboration in clinical practice
-
Henter JI, Gavhed D, Bergsten E, Horne AC, Trottestam H. Clinical guidelines and practices: examples from international collaboration in clinical practice. Rare Dis Orphan Drugs. 2014; S1: OP-14.
-
(2014)
Rare Dis Orphan Drugs
, vol.S1
, pp. 4-14
-
-
Henter, J.I.1
Gavhed, D.2
Bergsten, E.3
Horne, A.C.4
Trottestam, H.5
-
7
-
-
84908216511
-
-
Part V: Activities of member states and other European countries in the field of rare diseases July 2014. Accessed 10 Dec 2015
-
Rodwell C and Aymé S. (eds.). Report on the State of the Art of Rare Disease Activities in Europe, Part V: Activities of member states and other European countries in the field of rare diseases. July 2014. http://www.eucerd.eu/upload/file/Reports/2014ReportStateofArtRDActivitiesV.pdf. 2014. Accessed 10 Dec 2015.
-
(2014)
Report on the State of the Art of Rare Disease Activities in Europe
-
-
Rodwell, C.1
Aymé, S.2
-
8
-
-
84859361526
-
Beyond horses to zebras: Sicca syndrome
-
Beales DL. Beyond Horses to Zebras: Sicca Syndrome. J Hosp Librariansh. 2011; 11(4): 311-324.
-
(2011)
J Hosp Librariansh
, vol.11
, Issue.4
, pp. 311-324
-
-
Beales, D.L.1
-
12
-
-
85010017901
-
Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften e.V
-
Accessed 10 Dec
-
Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften e.V. (AWMF) leitlinen. http://www.awmf.org/leitlinien.html. Accessed 10 Dec 2015.
-
(2015)
(AWMF) leitlinen
-
-
-
13
-
-
85010017930
-
Improving the retrieval and dissemination of rare disease guidelines and research recommendations: A RARE-Bestpractices initiative
-
Hilton Boon M, Ritchie K, Manson J. Improving the retrieval and dissemination of rare disease guidelines and research recommendations: a RARE-Bestpractices initiative. Rare Dis Orphan Drugs. 2014; 1(1): 20-29.
-
(2014)
Rare Dis Orphan Drugs
, vol.1
, Issue.1
, pp. 20-29
-
-
Hilton Boon, M.1
Ritchie, K.2
Manson, J.3
-
14
-
-
84870044877
-
Guidelines for guidelines: Are they up to the task? A comparative assessment of clinical practice guideline development handbooks
-
PMID: 23189167
-
Ansari S, Rashidian A. Guidelines for guidelines: are they up to the task? A comparative assessment of clinical practice guideline development handbooks. PLoS One. 2012; 7(11): e49864. doi: 10.1371/ journal.pone.0049864 PMID: 23189167
-
(2012)
PLoS One
, vol.7
, Issue.11
, pp. e49864
-
-
Ansari, S.1
Rashidian, A.2
-
15
-
-
21044435529
-
A systematic review of appraisal tools for clinical practice guidelines: Multiple similarities and one common deficit
-
PMID: 15743883
-
Vlayen J, Aertgeerts B, Hannes K, Sermeus W, Ramaekers D. A systematic review of appraisal tools for clinical practice guidelines: multiple similarities and one common deficit. Int J Qual Health Care. 2005; 17(3): 235-42. doi: 10.1093/intqhc/mzi027 PMID: 15743883
-
(2005)
Int J Qual Health Care
, vol.17
, Issue.3
, pp. 235-242
-
-
Vlayen, J.1
Aertgeerts, B.2
Hannes, K.3
Sermeus, W.4
Ramaekers, D.5
-
16
-
-
0037323867
-
Development and validation of an international appraisal instrument for assessing the quality of clinical practice guidelines: The AGREE project
-
AGREE collaboration PMID: 12571340
-
AGREE collaboration. Development and validation of an international appraisal instrument for assessing the quality of clinical practice guidelines: the AGREE project. Qual Saf Health Care. 2003; 12(1): 18-23. doi: 10.1136/qhc.12.1.18 PMID: 12571340
-
(2003)
Qual Saf Health Care
, vol.12
, Issue.1
, pp. 18-23
-
-
-
17
-
-
77954608997
-
AGREE II: Advancing guideline development, reporting and evaluation in health care
-
PMID: 20603348
-
Brouwers MC, Kho ME, Browman GP, Burgers JS, Cluzeau F, Feder G et al. AGREE II: advancing guideline development, reporting and evaluation in health care. CMAJ. 2010; 182(18): E839-42. doi: 10.1503/cmaj.090449 PMID: 20603348
-
(2010)
CMAJ
, vol.182
, Issue.18
, pp. E839-E842
-
-
Brouwers, M.C.1
Kho, M.E.2
Browman, G.P.3
Burgers, J.S.4
Cluzeau, F.5
Feder, G.6
-
18
-
-
56749132011
-
Heterogeneity in cancer guidelines: Should we eradicate or tolerate?
-
PMID: 18662954
-
Pentheroudakis G, Stahel R, Hansen H, Pavlidis N. Heterogeneity in cancer guidelines: should we eradicate or tolerate? Ann Oncol. 2008; 19(12): 2067-78. doi: 10.1093/annonc/mdn418 PMID: 18662954
-
(2008)
Ann Oncol
, vol.19
, Issue.12
, pp. 2067-2078
-
-
Pentheroudakis, G.1
Stahel, R.2
Hansen, H.3
Pavlidis, N.4
-
19
-
-
55449095024
-
Development of evidence-based clinical practice guidelines (CPGs): Comparing approaches
-
PMID: 18954465
-
Turner T, Misso M, Harris C, Green S. Development of evidence-based clinical practice guidelines (CPGs): comparing approaches. Implement Sci. 2008; 3: 45. doi: 10.1186/1748-5908-3-45 PMID: 18954465
-
(2008)
Implement Sci.
, vol.3
, pp. 45
-
-
Turner, T.1
Misso, M.2
Harris, C.3
Green, S.4
-
20
-
-
84907386826
-
What type of evidence is currently being considered in the development of clinical practice guidelines for rare diseases?
-
Institute for Quality and Efficiency in Health Care, IQWiG Reports
-
Institute for Quality and Efficiency in Health Care, IQWiG Reports. What type of evidence is currently being considered in the development of clinical practice guidelines for rare diseases? Executive summary of rapid report V10-01, Version 1.0. 2011.
-
(2011)
Executive Summary of Rapid Report V10-01, Version 1. 0
-
-
-
21
-
-
85026277084
-
DYSCERNE: Developing clinical management guidelines for selected dysmorphic syndromes
-
Griffiths P, Strong K, Gardner S, Day R, Harrison C, Bronwyn K, et al. DYSCERNE: developing clinical management guidelines for selected dysmorphic syndromes. Orphanet J Rare Dis. 2010; 5(suppl 1): P20.
-
(2010)
Orphanet J Rare Dis
, vol.5
, pp. P20
-
-
Griffiths, P.1
Strong, K.2
Gardner, S.3
Day, R.4
Harrison, C.5
Bronwyn, K.6
-
22
-
-
85026278173
-
Professional clinical guidelines for rare diseases: Methodology
-
Kremp O., Professional clinical guidelines for rare diseases: methodology. Orphanet J Rare Dis. 2012; 7(suppl 2): A12.
-
(2012)
Orphanet J Rare Dis.
, vol.7
, pp. A12
-
-
Kremp, O.1
-
24
-
-
85009959258
-
-
Standing Guideline Commission of the Association of Scientific Medical Societies in Germany (AWMF) 1st Edition 2012. English version Accessed 19 Jan
-
Standing Guideline Commission of the Association of Scientific Medical Societies in Germany (AWMF). AWMF Guidance Manual and Rules for Guideline Development, 1st Edition 2012. English version. http://www.awmf.org/leitlinien/awmf-regelwerk.html. Accessed 19 Jan 2016.
-
(2016)
AWMF Guidance Manual and Rules for Guideline Development
-
-
-
25
-
-
0004312115
-
-
Scottish Intercollegiate Guidelines Network (SIGN) Edinburgh: SIGN Accessed 8 Sept 2016
-
Scottish Intercollegiate Guidelines Network (SIGN). SIGN 50: a guideline developer's handbook. Edinburgh: SIGN; 2015. http://www.sign.ac.uk. Accessed 8 Sept 2016.
-
(2015)
SIGN 50: A Guideline Developer's Handbook
-
-
-
27
-
-
85009958245
-
-
Bioinformatics & Evolutionary Genomics, VIB/UGent, Belgium Accessed 10 Dec
-
Bioinformatics & Evolutionary Genomics, VIB/UGent, Belgium. http://bioinformatics.psb.ugent.be/ webtools/Venn/. Accessed 10 Dec 2015.
-
(2015)
-
-
-
28
-
-
85009988843
-
-
Institut National du cancer Accessed 10 Dec
-
Institut National du cancer. http://www.e-cancer.fr/. Accessed 10 Dec 2015.
-
(2015)
-
-
-
29
-
-
84865550002
-
Medical literature searches: A comparison of PubMed and Google Scholar
-
PMID: 22925384
-
Nourbakhsh E, Nugent R, Wang H, Cevik C, Nugent K. Medical literature searches: a comparison of PubMed and Google Scholar. Health Info Libr J. 2012; 29(3): 214-22. doi: 10.1111/j.1471-1842.2012. 00992.x PMID: 22925384
-
(2012)
Health Info Libr J
, vol.29
, Issue.3
, pp. 214-222
-
-
Nourbakhsh, E.1
Nugent, R.2
Wang, H.3
Cevik, C.4
Nugent, K.5
-
30
-
-
84883366780
-
Retrieving clinical evidence: A comparison of PubMed and Google Scholar for quick clinical searches
-
PMID: 23948488
-
Shariff SZ, Bejaimal SA, Sontrop JM, Iansavichus AV, Haynes RB, Weir MA, Garg AX. Retrieving clinical evidence: a comparison of PubMed and Google Scholar for quick clinical searches. J Med Internet Res. 2013; 15(8): e164. doi: 10.2196/jmir.2624 PMID: 23948488
-
(2013)
J Med Internet Res
, vol.15
, Issue.8
, pp. e164
-
-
Shariff, S.Z.1
Bejaimal, S.A.2
Sontrop, J.M.3
Iansavichus, A.V.4
Haynes, R.B.5
Weir, M.A.6
Garg, A.X.7
-
31
-
-
84952315509
-
Review and evaluation of the methodological quality of the existing guidelines and recommendations for inherited neurometabolic disorders
-
Cassis L, Cortès-Saladelafont E, Molero-Luis M, Yubero D, González MJ, Herrero AO, et al. Review and evaluation of the methodological quality of the existing guidelines and recommendations for inherited neurometabolic disorders. Orphanet J Rare Dis. 2015; 10(1): 164.
-
(2015)
Orphanet J Rare Dis.
, vol.10
, Issue.1
, pp. 164
-
-
Cassis, L.1
Cortès-Saladelafont, E.2
Molero-Luis, M.3
Yubero, D.4
González, M.J.5
Herrero, A.O.6
-
32
-
-
84865992691
-
Systematic review of the methodological quality of clinical guideline development for the management of chronic disease in Europe
-
PMID: 22795610
-
Knai C, Brusamento S, Legido-Quigley H, Saliba V, Panteli D, Turk E, et al. Systematic review of the methodological quality of clinical guideline development for the management of chronic disease in Europe. Health Policy. 2012; 107(2-3): 157-67. doi: 10.1016/j.healthpol.2012.06.004 PMID: 22795610
-
(2012)
Health Policy
, vol.107
, Issue.2-3
, pp. 157-167
-
-
Knai, C.1
Brusamento, S.2
Legido-Quigley, H.3
Saliba, V.4
Panteli, D.5
Turk, E.6
-
33
-
-
84908139093
-
Clinical practice guidelines and consensus statements in oncology-an assessment of their methodological quality
-
Jacobs C, Graham ID, Makarski J, Chassé M, Fergusson D, Hutton B, et al. Clinical practice guidelines and consensus statements in oncology-an assessment of their methodological quality. PLoS One. 2014; 9(10): e110469.
-
(2014)
PLoS One
, vol.9
, Issue.10
, pp. e110469
-
-
Jacobs, C.1
Graham, I.D.2
Makarski, J.3
Chassé, M.4
Fergusson, D.5
Hutton, B.6
-
34
-
-
85026275207
-
Erratum
-
PMID: 25329669
-
Erratum in: PLoS One. 2014; 9(12): e116267. doi: 10.1371/journal.pone. 0110469 PMID: 25329669
-
(2014)
PLoS One
, vol.9
, Issue.12
, pp. e116267
-
-
-
35
-
-
84928747941
-
RARE-Bestpractices: A platform for sharing best practices for the management of rare diseases
-
Taruscio D, Morciano C, Laricchiuta P, Mincarone P, Palazzo F, Leo CG, et al. RARE-Bestpractices: a platform for sharing best practices for the management of rare diseases. Rare Dis Orphan Drugs. 2014; 1(1): 5-8.
-
(2014)
Rare Dis Orphan Drugs
, vol.1
, Issue.1
, pp. 5-8
-
-
Taruscio, D.1
Morciano, C.2
Laricchiuta, P.3
Mincarone, P.4
Palazzo, F.5
Leo, C.G.6
-
37
-
-
85009988806
-
-
The European Parliament and the Council of the European Union. Regulation (EU) No 282/2014 of the European Parliament and of the Council of 11 March 2014 on the establishment of a third Programme for the Union's action in the field of health (2014-2020) and repealing Decision No 1350/2007/EC Text with EEA relevance 21.3.2014 Accessed 19 Jan
-
The European Parliament and the Council of the European Union. Regulation (EU) No 282/2014 of the European Parliament and of the Council of 11 March 2014 on the establishment of a third Programme for the Union's action in the field of health (2014-2020) and repealing Decision No 1350/2007/EC Text with EEA relevance. Official Journal of the European Union. 86; 21.3.2014, 1-13. Available: http://eurlex.europa.eu/legal-content/EN/TXT/?uri=uriserv:OJ.L-.2014.086.01.0001.01.ENG. Accessed 19 Jan 2016.
-
(2016)
Official Journal of the European Union
, vol.86
, pp. 1-13
-
-
-
38
-
-
84863776054
-
Council Recommendation of 8 June 2009 on an action in the field of rare diseases
-
Council of the European Union 3.7.2009 Accessed 19 Jan
-
Council of the European Union. Council Recommendation of 8 June 2009 on an action in the field of rare diseases. Official Journal of the European Union. 151; 3.7.2009, 7-10. Available: http://eur-lex. europa.eu/legal-content/EN/TXT/?uri=CELEX:32009H0703%2802%29. Accessed 19 Jan 2016.
-
(2016)
Official Journal of the European Union
, vol.151
, pp. 7-10
-
-
-
39
-
-
85009941581
-
-
Accessed 10 Dec
-
patientINFORM. http://www.patientinform.org/. Accessed 10 Dec 2015.
-
(2015)
PatientINFORM
-
-
-
40
-
-
84907537420
-
The expert patient: Towards a novel definition
-
PMID: 25271227
-
Cordier JF. The expert patient: towards a novel definition. Eur Respir J. 2014; 44(4):853-7. doi: 10. 1183/09031936.00027414 PMID: 25271227
-
(2014)
Eur Respir J
, vol.44
, Issue.4
, pp. 853-857
-
-
Cordier, J.F.1
-
41
-
-
33845657303
-
-
Copenhagen, WHO Regional Office for Europe. Health Evidence Network report Accessed 19 Jan 2016
-
Wallerstein N. What is the evidence on effectiveness of empowerment to improve health? Copenhagen, WHO Regional Office for Europe. Health Evidence Network report. 2006. http://www.euro.who.int/en/ data-and-evidence/evidence-informed-policy-making/publications/pre2009/what-is-the-evidence-oneffectiveness-of-empowerment-to-improve-health. Accessed 19 Jan 2016.
-
(2006)
What is the Evidence on Effectiveness of Empowerment to Improve Health?
-
-
Wallerstein, N.1
-
42
-
-
85009988826
-
-
Orphan Drugs Collection, Lists of medicinal products for rare diseases in Europe, April 2015. Accessed 19 Jan 2016
-
Orphan Drugs Collection, Lists of medicinal products for rare diseases in Europe, April 2015. http:// www.orpha.net/orphacom/cahiers/docs/GB/list-of-orphan-drugs-in-europe.pdf. 2015. Accessed 19 Jan 2016.
-
(2015)
-
-
-
43
-
-
85009948593
-
-
European Partnership for Action Against Cancer (EPAAC) Accessed 19 Jan
-
European Partnership for Action Against Cancer (EPAAC). http://www.epaac.eu/. Accessed 19 Jan 2016.
-
(2016)
-
-
-
44
-
-
85009958227
-
-
RARECARENet Accessed 19 Jan
-
RARECARENet, Information Network on Rare Cancer. http://www.rarecarenet.eu/rarecarenet/. Accessed 19 Jan 2016.
-
(2016)
Information Network on Rare Cancer
-
-
-
45
-
-
84963953608
-
-
Institut National du cancer partout en France, 2nd Edition, Feb Accessed 19 Jan 2016
-
Institut National du cancer. Plan Cancer 2014-2019, guérir et prévenir les cancers: donnons les mêmes chances à tous, partout en France, 2nd Edition, Feb 2014. http://www.e-cancer.fr/Plan-cancer/Plancancer-2014-2019-priorites-et-objectifs. Accessed 19 Jan 2016.
-
(2014)
Plan Cancer 2014-2019, Guérir et Prévenir les Cancers: Donnons les Mêmes Chances À Tous
-
-
-
47
-
-
85015273791
-
-
July 2014. Accessed 10 Dec 2015. 47 2014 User satisfaction survey of the Orphanet website in English, Orphanet report series, Reports Collection. http://www.orpha.net/orphacom/cahiers/docs/GB/Orphanet-survey2014.pdf Accessed 10 Dec 2015
-
Rodwell C. and Aymé S. (eds.), Report on the State of the Art of Rare Disease Activities in Europe. Part I: overview of rare disease activities in Europe. July 2014. http://www.eucerd.eu/upload/file/Reports/ 2014ReportStateofArtRDActivities.pdf. 2014. Accessed 10 Dec 2015. 47. 2014 User satisfaction survey of the Orphanet website in English, Orphanet report series, Reports Collection. http://www.orpha.net/orphacom/cahiers/docs/GB/Orphanet-survey2014.pdf. Accessed 10 Dec 2015.
-
(2014)
Report on the State of the Art of Rare Disease Activities in Europe Part I: Overview of Rare Disease Activities in Europe
-
-
Rodwell, C.1
Aymé, S.2
|