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There are 142392 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. You have free access to this content
    Poster Session Abstracts

    Pediatric Pulmonology

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

    Version of Record online : 4 SEP 2015, DOI: 10.1002/ppul.23297

    Corrected by:

    Errata: Errata

    Vol. 50, Issue 12, 1175, Version of Record online: 9 NOV 2015

  2. 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

    Version of Record online : 26 AUG 2013, DOI: 10.1002/humu.22390

  3. 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

    Version of Record online : 17 DEC 2012, DOI: 10.1111/j.1749-6632.2012.06771.x

  4. You have free access to this content
    Abstracts

    Pharmacoepidemiology and Drug Safety

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

    Version of Record 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

    Version of Record 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

    Version of Record 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

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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

    Version of Record online : 2 JUL 2012, DOI: 10.1002/humu.22154

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

    Pediatric Pulmonology

    Volume 51, Issue S45, October 2016, Pages: S194–S485,

    Version of Record online : 21 SEP 2016, DOI: 10.1002/ppul.23576

  10. You have free access to this content
    Abstract

    Pharmacoepidemiology and Drug Safety

    Volume 25, Issue S3, August 2016, Pages: 3–679,

    Version of Record online : 24 AUG 2016, DOI: 10.1002/pds.4070

  11. You have free access to this content
    Abstracts

    Pharmacoepidemiology and Drug Safety

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

    Version of Record online : 25 SEP 2015, DOI: 10.1002/pds.3838

  12. 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

    Version of Record online : 31 JUL 2014, DOI: 10.1002/pds.3643

  13. You have free access to this content
    Testing the feasibility of a National Spina Bifida Patient Registry

    Birth Defects Research Part A: Clinical and Molecular Teratology

    Volume 97, Issue 1, January 2013, Pages: 36–41, Judy K. Thibadeau, Elisabeth A. Ward, Minn M. Soe, Tiebin Liu, Mark Swanson, Kathleen J. Sawin, Kurt A. Freeman, Heidi Castillo, Karen Rauen and Michael S. Schechter

    Version of Record online : 2 NOV 2012, DOI: 10.1002/bdra.23094

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    Symposium Summaries

    Pediatric Pulmonology

    Volume 50, Issue S41, October 2015, Pages: S108–S192,

    Version of Record online : 4 SEP 2015, DOI: 10.1002/ppul.23296

  15. Abstracts

    Pharmacoepidemiology and Drug Safety

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

    Version of Record online : 30 SEP 2014, DOI: 10.1002/pds.3701

  16. You have free access to this content
    2015 ACR/ARHP Annual Meeting Abstract Supplement

    Arthritis & Rheumatology

    Volume 67, Issue S10, October 2015, Pages: 1–4046,

    Version of Record online : 5 NOV 2015, DOI: 10.1002/art.39448

  17. You have free access to this content
    GenomeConnect: Matchmaking Between Patients, Clinical Laboratories, and Researchers to Improve Genomic Knowledge

    Human Mutation

    Volume 36, Issue 10, October 2015, Pages: 974–978, Brianne E. Kirkpatrick, Erin Rooney Riggs, Danielle R. Azzariti, Vanessa Rangel Miller, David H. Ledbetter, David T. Miller, Heidi Rehm, Christa Lese Martin, W. Andrew Faucett and On Behalf of the ClinGen Resource

    Version of Record online : 6 AUG 2015, DOI: 10.1002/humu.22838

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    Monday, December 4, 2006 Poster Session III 7:30 a.m. – 4:30 p.m.

    Epilepsia

    Volume 47, Issue s4, October 2006, Pages: 204–289,

    Version of Record online : 30 OCT 2006, DOI: 10.1111/j.1528-1167.2006.00001_7.x

  19. SIOP 2015 Scientific Programme + Index

    Pediatric Blood & Cancer

    Volume 62, Issue S4, November 2015, Pages: S143–S418,

    Version of Record online : 9 SEP 2015, DOI: 10.1002/pbc.25715

  20. Cesarean section and offspring's risk of inflammatory bowel disease: A national cohort study

    Inflammatory Bowel Diseases

    Volume 18, Issue 5, May 2012, Pages: 857–862, Peter Bager, Jacob Simonsen, Nete Munk Nielsen and Morten Frisch

    Version of Record online : 7 JUL 2011, DOI: 10.1002/ibd.21805