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There are 116882 results for: content related to: Promoting the use of standard questions in patient registries and research: A library of questions related to rare diseases

  1. The TREAT-NMD Duchenne Muscular Dystrophy Registries: Conception, Design, and Utilization by Industry and Academia

    Human Mutation

    Volume 34, Issue 11, November 2013, Pages: 1449–1457, Catherine L. Bladen, Karen Rafferty, Volker Straub, Soledad Monges, Angélica Moresco, Hugh Dawkins, Anna Roy, Teodora Chamova, Velina Guergueltcheva, Lawrence Korngut, Craig Campbell, Yi Dai, Nina Barišić, Tea Kos, Petr Brabec, Jes Rahbek, Jaana Lahdetie, Sylvie Tuffery-Giraud, Mireille Claustres, France Leturcq, Rabah Ben Yaou, Maggie C. Walter, Olivia Schreiber, Veronika Karcagi, Agnes Herczegfalvi, Venkatarman Viswanathan, Farhad Bayat, Isis de la caridad Guerrero Sarmiento, Anna Ambrosini, Francesca Ceradini, En Kimura, Janneke C. van den Bergen, Miriam Rodrigues, Richard Roxburgh, Anna Lusakowska, Jorge Oliveira, Rosário Santos, Elena Neagu, Niculina Butoianu, Svetlana Artemieva, Vedrana Milic Rasic, Manuel Posada, Francesc Palau, Björn Lindvall, Clemens Bloetzer, Ayşe Karaduman, Haluk Topaloğlu, Serap Inal, Piraye Oflazer, Angela Stringer, Andriy V. Shatillo, Ann S. Martin, Holly Peay, Kevin M. Flanigan, David Salgado, Brigitta von Rekowski, Stephen Lynn, Emma Heslop, Sabina Gainotti, Domenica Taruscio, Jan Kirschner, Jan Verschuuren, Kate Bushby, Christophe Béroud and Hanns Lochmüller

    Article first published online : 26 AUG 2013, DOI: 10.1002/humu.22390

  2. Patient registries: useful tools for clinical research in myasthenia gravis

    Annals of the New York Academy of Sciences

    Volume 1274, Issue 1, December 2012, Pages: 107–113, Fulvio Baggi, Renato Mantegazza, Carlo Antozzi and Donald Sanders

    Article first published online : 17 DEC 2012, DOI: 10.1111/j.1749-6632.2012.06771.x

  3. You have full text access to this OnlineOpen article
    Characteristics and temporal trends in patient registries: focus on the life sciences industry, 1981–2012

    Pharmacoepidemiology and Drug Safety

    Volume 24, Issue 4, April 2015, Pages: 389–398, Karin Travers, Rachel H. Sallum, Meghan D. Burns, Charles E. Barr, Mary S. Beattie, Chris L. Pashos and Bryan R. Luce

    Article first published online : 31 JUL 2014, DOI: 10.1002/pds.3643

  4. You have free access to this content

    Pharmacoepidemiology and Drug Safety

    Volume 21, Issue s3, August 2012, Pages: 1–481,

    Article first published online : 27 AUG 2012, DOI: 10.1002/pds.3324

  5. Use of patient registries and administrative datasets for the study of pediatric cancer

    Pediatric Blood & Cancer

    Volume 62, Issue 9, September 2015, Pages: 1495–1500, Henry E. Rice, Brian R. Englum, Brian C. Gulack, Obinna O. Adibe, Elizabeth T. Tracy, Susan G. Kreissman and Jonathan C. Routh

    Article first published online : 21 MAR 2015, DOI: 10.1002/pbc.25506

  6. Patient Registries in Primary Care: Essential Element for Quality Improvement

    Mount Sinai Journal of Medicine: A Journal of Translational and Personalized Medicine

    Volume 79, Issue 4, July/August 2012, Pages: 475–480, Elizabeth I. Molina-Ortiz, Aida C. Vega and Neil S. Calman

    Article first published online : 11 JUL 2012, DOI: 10.1002/msj.21328

  7. Registries

    Pharmacoepidemiology, Fifth Edition

    Nancy A. Dreyer, Priscilla Velentgas, Pages: 331–346, 2012

    Published Online : 3 JAN 2012, DOI: 10.1002/9781119959946.ch21

  8. You have free access to this content
    Poster Session Abstracts

    Pediatric Pulmonology

    Volume 50, Issue S41, October 2015, Pages: S193–S453,

    Article first published online : 4 SEP 2015, DOI: 10.1002/ppul.23297

    Corrected by:

    Errata: Errata

    Vol. 50, Issue 12, 1175, Article first published online: 9 NOV 2015

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    Pharmacoepidemiology and Drug Safety

    Volume 24, Issue S1, September 2015, Pages: 1–587,

    Article first published online : 25 SEP 2015, DOI: 10.1002/pds.3838

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    Policies to foster quality improvement registries: lessons from the Swedish case

    Journal of Internal Medicine

    C. Levay

    Article first published online : 5 OCT 2015, DOI: 10.1111/joim.12438

  11. Abstracts

    Pharmacoepidemiology and Drug Safety

    Volume 20, Issue S1, August 2011, Pages: S1–S364,

    Article first published online : 12 AUG 2011, DOI: 10.1002/pds.2206

  12. You have full text access to this OnlineOpen article
    Role of international registries in enhancing the care of familial hypercholesterolaemia

    International Journal of Evidence-Based Healthcare

    Volume 11, Issue 2, June 2013, Pages: 134–139, Emma Hammond, Gerald F Watts, Yaffa Rubinstein, Waleed Farid, Michael Livingston, Joshua W Knowles, Hanns Lochmüller, Matthew Bellgard and Hugh JS Dawkins

    Article first published online : 10 JUN 2013, DOI: 10.1111/1744-1609.12023

  13. Abstracts of the 26th International Conference on Pharmacoepidemiology & Therapeutic Risk Management, 19–22 August 2010, Brighton, UK

    Pharmacoepidemiology and Drug Safety

    Volume 19, Issue S1, August 2010, Pages: S1–S347,

    Article first published online : 24 AUG 2010, DOI: 10.1002/pds.2019

  14. German psoriasis registry PsoBest: objectives, methodology and baseline data

    JDDG: Journal der Deutschen Dermatologischen Gesellschaft

    Volume 12, Issue 1, January 2014, Pages: 48–57, Matthias Augustin, Christina Spehr, Marc A. Radtke, Wolf-Henning Boehncke, Thomas Luger, Ulrich Mrowietz, Michael Reusch, Klaus Strömer, Gottfried Wozel, Ralph v. Kiedrowski, Stephan J. Rustenbach, Sandra Purwins and Kristian Reich

    Article first published online : 7 JAN 2014, DOI: 10.1111/ddg.12233

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    Enhancing haemophilia care through registries


    Volume 20, Issue s4, May 2014, Pages: 121–129, G. Dolan, M. Makris, P. H. B. Bolton-Maggs and J. A. Rowell

    Article first published online : 25 APR 2014, DOI: 10.1111/hae.12406

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    A modular approach to disease registry design: Successful adoption of an internet-based rare disease registry

    Human Mutation

    Volume 33, Issue 10, October 2012, Pages: E2356–E2366, Matthew I Bellgard, Andrew Macgregor, Fred Janon, Adam Harvey, Peter O'Leary, Adam Hunter and Hugh Dawkins

    Article first published online : 2 JUL 2012, DOI: 10.1002/humu.22154

  17. Specialist-led diabetes registries and predictors of poor glycemic control in type 2 diabetes: Insights into the functionally refractory patient from the LMC Diabetes Registry database

    Journal of Diabetes

    Ronnie Aronson, Naomi Orzech, Chenglin Ye, Ronald Goldenberg and Vivien Brown

    Article first published online : 24 MAR 2015, DOI: 10.1111/1753-0407.12257

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    Review of 103 Swedish Healthcare Quality Registries

    Journal of Internal Medicine

    Volume 277, Issue 1, January 2015, Pages: 94–136, L. Emilsson, B. Lindahl, M. Köster, M. Lambe and J. F. Ludvigsson

    Article first published online : 27 SEP 2014, DOI: 10.1111/joim.12303

  19. The Adult Life After Childhood Cancer in Scandinavia (ALiCCS) Study: Design and Characteristics

    Pediatric Blood & Cancer

    Volume 62, Issue 12, December 2015, Pages: 2204–2210, Peter H. Asdahl, Jeanette F. Winther, Trine G. Bonnesen, Sofie De Fine Licht, Thorgerdur Gudmundsdottir, Harald Anderson, Laura Madanat-Harjuoja, Laufey Tryggvadottir, Milada Cvancarova Småstuen, Anna Sällfors Holmqvist, Henrik Hasle, Jørgen H. Olsen and on behalf of the ALiCCS Study Group

    Article first published online : 20 JUL 2015, DOI: 10.1002/pbc.25661

  20. Abstracts

    Pharmacoepidemiology and Drug Safety

    Volume 23, Issue S1, October 2014, Pages: 1–497,

    Article first published online : 30 SEP 2014, DOI: 10.1002/pds.3701