Recommendations for Improving the Quality of Rare Disease Registries

by Yllka Kodra, Jérôme Weinbach, Manuel Posada-de-la-Paz, Alessio Coi, S. Lydie Lemonnier, David van Enckevort, Marco Roos, Annika Jacobsen, Ronald Cornet, S. Faisal Ahmed, Virginie Bros-Facer, Veronica Popa, Marieke Van Meel, Daniel Renault, Rainald von Gizycki, Michele Santoro, Paul Landais, Paola Torreri, Claudio Carta, Deborah Mascalzoni, Sabina Gainotti, Estrella Lopez, Anna Ambrosini, Heimo Müller, Robert Reis, Fabrizio Bianchi, Yaffa R. Rubinstein, Hanns Lochmüller, Domenica Taruscio
Published 2018-08-01

Patient registries for home oxygen research and evaluation

by Lacasse Y, Krishnan JA, Maltais F, Ekström M
Published 2019-06-01

Korean medicine registry for low back pain – A study protocol for prospective observational multi-center study (KLOS)

by Youme Ko, Bo-Hyoung Jang, Min-Seok Oh, Byung-Cheul Shin, Sun Joong Kim, Yun-Yeop Cha, Youn Seok Ko, Eui-Hyoung Hwang, Eun Jung Lee, Jae Young Jung, Yun-Kyung Song, Seong-Gyu Ko
Published 2020-12-01

Data for the elaboration of the CIPROS checklist with items for a patient registry software system: Examples and explanations

by Doris Lindoerfer, Ulrich Mansmann
Published 2017-10-01

Characteristics of COPD Phenotypes in Serbia

by Lazic Z, Stankovic I, Milenkovic B, Zvezdin B, Hromis S, Jankovic S, Cupurdija V
Published 2021-03-01

The current status of the problem with systemic lupus erythematosus in Kazakhstan

by B. G. Isayeva, M. M. Saparbayeva, S. M. Isayeva, M. M. Kulshymanova, Sh. M. Kaiyrgali, M. P. Bizhanova, K. Zh. Nurgaliyev, L. Kosherbayeva, B. A. Kulymbetova, K. K. Rysbekova, S. K. Solovyev, E. A. Aseeva
Published 2020-03-01

Methodology of advanced medical information registries design

by Fedonnikov A.S., Kolesnikova A.S., Rozhkova Yu.Yu., Kirillova I.V., Bessonov L.V., Ulyanov V.Yu., Kossovich L.Yu.
Published 2018-09-01

High prevalence of self‐reported autism spectrum disorder in the Propionic Acidemia Registry

by Maria L. Cotrina, Sindy Ferreiras, Patricia Schneider
Published 2020-01-01

Survival benefit of ixazomib, lenalidomide and dexamethasone (IRD) over lenalidomide and dexamethasone (Rd) in relapsed and refractory multiple myeloma patients in routine clinical...

by Jiri Minarik, Tomas Pika, Jakub Radocha, Alexandra Jungova, Jan Straub, Tomas Jelinek, Ludek Pour, Petr Pavlicek, Martin Mistrik, Lucie Brozova, Petra Krhovska, Katerina Machalkova, Pavel Jindra, Ivan Spicka, Hana Plonkova, Martin Stork, Jaroslav Bacovsky, Lenka Capkova, Michal Sykora, Petr Kessler, Lukas Stejskal, Adriana Heindorfer, Jana Ullrychova, Tomas Skacel, Vladimir Maisnar, Roman Hajek
Published 2021-01-01

Multiple sclerosis: patient-reported quality of life in the Świętokrzyskie Region

by Waldemar Brola, Piotr Sobolewski, Małgorzata Fudala, Stanisław Flaga, Konrad Jantarski
Published 2017-09-01

Clinical patient registry recruitment and retention: a survey of patients in two chronic disease registries

by Daniel H. Solomon, Nancy A. Shadick, Michael E. Weinblatt, Michelle Frits, Christine Iannaccone, Agnes Zak, Joshua R. Korzenik
Published 2017-04-01

The utility of including pathology reports in improving the computational identification of patients

by Wei Chen, Yungui Huang, Brendan Boyle, Simon Lin
Published 2016-01-01

Bacteriophage Therapy for Difficult-to-Treat Infections: The Implementation of a Multidisciplinary Phage Task Force (<i>The PHAGEFORCE Study Protocol</i>)

by Jolien Onsea, Saartje Uyttebroek, Baixing Chen, Jeroen Wagemans, Cédric Lood, Laura Van Gerven, Isabel Spriet, David Devolder, Yves Debaveye, Melissa Depypere, Lieven Dupont, Paul De Munter, Willy E. Peetermans, Vera van Noort, Maia Merabishvili, Jean-Paul Pirnay, Rob Lavigne, Willem-Jan Metsemakers
Published 2021-08-01

Liver cirrhosis in the Moscow Region: figures and facts

by P. O. Bogomolov, M. V. Matsievich, A. O. Bueverov, K. Yu. Kokina, N. V. Voronkova, V. D. Beznosenko
Published 2018-04-01

The effects of interventional mitral valve repair using the MitraClip System on the results of pulmonary function testing, pulmonary pressure and diffusing capacity of the lung

by Lucie Kretzler, Stephan Große, Stephan Wiedemann, Carsten Wunderlich, Chris Nowak, Christian Riedel, Tomáš Sieger, Steffen Schoen
Published 2021-05-01

Treat Iron-Related Childhood-Onset Neurodegeneration (TIRCON)—An International Network on Care and Research for Patients With Neurodegeneration With Brain Iron Accumulation (NBIA)...

by Ivan Karin, Boriana Büchner, Florence Gauzy, Angelika Klucken, Thomas Klopstock, Thomas Klopstock, Thomas Klopstock
Published 2021-02-01

Phenotypic diversity in an international Cure VCP Disease registry

by Chiseko Ikenaga, Andrew R. Findlay, Michelle Seiffert, Allison Peck, Nathan Peck, Nicholas E. Johnson, Jeffrey M. Statland, Conrad C. Weihl
Published 2020-09-01

Ten years of the Hunter Outcome Survey (HOS): insights, achievements, and lessons learned from a global patient registry

by Joseph Muenzer, Simon A. Jones, Anna Tylki-Szymańska, Paul Harmatz, Nancy J. Mendelsohn, Nathalie Guffon, Roberto Giugliani, Barbara K. Burton, Maurizio Scarpa, Michael Beck, Yvonne Jangelind, Elizabeth Hernberg-Stahl, Maria Paabøl Larsen, Tom Pulles, David A. H. Whiteman
Published 2017-05-01