Abstracts tagged "data collection"

Abstract Number: 342 • 2018 ACR/ARHP Annual Meeting
Optimizing the Dataset to Collect from Patients to Accurately Predict Their Status Prior to the Clinic Visit
Eric Newman¹, Elizabeth Thomas², Andrea Berger³ and H. Lester Kirchner³, ¹Department of Rheumatology, Geisinger Medical Center, Danville, PA, ²Rheumatology, Geisinger Medical Center, Danville, PA, ³Geisinger Medical Center, Danville, PA
Background/Purpose: Understanding a patient’s status before entering the exam room, or accurately tracking status between visits, is vital to creating more efficient ways to apply…
Abstract Number: 2426 • 2018 ACR/ARHP Annual Meeting
Defining a Standardized Core Data Set for Pregnancy Registers in Rheumatic Diseases – an European Approach
Yvette Meißner¹, Anja Strangfeld¹, Nathalie Costedoat-Chalumeau^2,3, Frauke Förger^4,5, Anna Moltó⁶, Marianne Wallenius^7,8 and Rebecca Fischer-Betz⁹, ¹Programme Area Epidemiology, German Rheumatism Research Center, Berlin, Germany, ²Université Paris-Descartes, Paris, France, ³Internal Medicine, Hopital Cochin, Paris, France, ⁴University of Bern, Bern, Switzerland, ⁵Rheumatology, Clinical Immunology and Allergology, Inselspital-University Hospital, Bern, Switzerland, ⁶Rheumatology B Department, Paris Descartes University, Cochin Hospital, AP-HP,Paris, Paris, France, ⁷Norwegian University of Science and Technology, Trondheim, Norway, ⁸St. Olav's University Hospital, Trondheim, Norway, ⁹Department of Rheumatology and Hiller Research Unit, University Hospital Duesseldorf, Duesseldorf, Germany
Background/Purpose: Robust data on the outcomes of pregnancy and influence of drug exposure in various inflammatory rheumatic diseases (IRD) are needed. Joint analyses of data…
Abstract Number: 212 • 2017 ACR/ARHP Annual Meeting
Treatment Patterns in Large Vessel Arteritis (Giant Cell Arteritis and Temporal Arteritis): Findings from a Large Contemporaneous Real-World Cohort in the US
Zhaohui Su¹, Vandana Menon¹, Richard Gliklich² and Tom Brecht¹, ¹Research, OM1, Inc, Cambridge, MA, ²OM1, Inc, Cambridge, MA
Background/Purpose: Giant cell arteritis (GCA) is the most common form of primary systemic vasculitis with annual incidence as high as 27 per 100,000 in persons…
Abstract Number: 2047 • 2017 ACR/ARHP Annual Meeting
Development and Implementation of a “Data-in-Once” Model for a Pediatric Rheumatology Learning Health System
Tzielan Lee¹, Sharon Bout-Tabaku², Joshua Conkle³, Karan Iyer⁴, Chris Servick² and Esi Morgan³, ¹Pediatric Rheumatology, Stanford University, Palo Alto, CA, ²Nationwide Children's Hospital, Columbus, OH, ³Cincinnati Children's Hospital, Cincinnati, OH, ⁴Stanford University, Stanford, CA
Background/Purpose: Medical institutions are adopting electronic health records (EHR) in accordance with Meaningful Use making it possible to standardize and capture patient data for registries…
Abstract Number: 2854 • 2017 ACR/ARHP Annual Meeting
Optimizing Data Capture for Performance – Metrics Using Smartphone App Technology
James Willig¹, Jeffrey R. Curtis², Andrew Westfall³, Donald Lein⁴, Christian Ray Smith⁴, Jonathan Cortis⁵, Clayton Rice⁵ and Christopher Hurt⁴, ¹Med - Infectious Diseases, University of Alabama at Birmingham, Birmingham, AL, ²Rheumatology & Immunology, University of Alabama at Birmingham, Birmingham, AL, ³Department of Biostatistics, School of Public Health, University of Alabama at Birmingham, Birmingham, AL, ⁴University of Alabama at Birmingham, Birmingham, AL, ⁵CTS, Inc, Birmingham, AL
Background/Purpose: Gait speed has been associated with many clinical outcomes (e.g. frailty, mortality, joint replacement need, etc.) relevant for rheumatologic conditions. Measuring Gait speed (stride…
Abstract Number: 98 • 2016 ACR/ARHP Annual Meeting
Daily Symptom Reports in a Smartphone-Based Study ‘Cloudy with a Chance of Pain’: Patterns of Attrition over the First Six Months
Katie Druce¹, Sabine N van der Veer², Mohammed A Chowdhury¹, John McBeth³, Jamie C Sergeant¹, Rikesh Patel³ and William G Dixon⁴, ¹Arthritis Research UK Centre for Epidemiology, The University of Manchester, Manchester, United Kingdom, ²Health e-Research Centre, University of Manchester, Manchester, United Kingdom, ³Manchester Academic Health Science Centre, Arthritis Research UK Centre for Epidemiology, The University of Manchester, Manchester, United Kingdom, ⁴Arthritis Research UK Centre for Epidemiology, The University of Manchester, Manchester, Great Britain
Background/Purpose: The increasing uptake of smartphones and health apps provides opportunities for epidemiological studies to collect regular information from large numbers of people. This offers…
Abstract Number: 263 • 2016 ACR/ARHP Annual Meeting
How Does Sarcoidosis Present in Spain? Characteristics at Diagnosis of 979 Patients from the Sarcogeas-SEMI Registry
Pilar Brito-Zerón^1,2, Belchin Kostov³, Marta Pérez de Lis⁴, Guadalupe Fraile⁵, Ricardo Gómez De La Torre⁶, María Roca Herrera⁷, Begoña De Escalante Yangüela⁸, Ana Alguacil⁹, Mercedes Pilar Perez Conesa¹⁰, Francisco Javier Rascón¹¹, Jose Salvador Garcia Morillo¹², Carlos Feijoo Massó¹³, Eva Fonseca Aizpuru¹⁴, Mariona Bonet¹⁵, Naya Faro Minguez¹⁶, Gloria De La Red Bellvis¹⁷, Eva Calvo Begueria¹⁸, Albert Gómez Lozano¹⁹, Enrique Peral Gutiérrez De Ceballos²⁰, Jorge Francisco Gómez Cerezo²¹, Gracia Cruz Caparrós²², Patricia Perez Guerrero²³, Sergio Rodríguez Fernández²⁴, Alberto Gato Diez²⁵, Neera Toledo Samaniego²⁶, Miriam Akasbi²⁷, Angel Robles²⁸, Inmaculada Ojeda²⁹, Maria José Vives³⁰, María Penadés Vidal³¹, César Morcillo³², Moisés De Vicente³³, Soledad Retamozo^2,34, Lucio Pallarés¹¹, Manuel Ramos-Casals³⁵, Roberto Pérez-Alvarez⁴ and SARCOGEAS Registry, GEAS-SEMI, ¹Autoimmune Diseases Unit, Department of Medicine, Hospital CIMA- Sanitas, Barcelona., Bacelona, Spain, ²Laboratory of Systemic Autoimmune Diseases “Josep Font”, CELLEX, Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Department of Systemic Autoimmune Diseases, ICMID, Hospital Clinic, Barcelona, Barcelona, Spain, ³Primary Care Research Group, IDIBAPS, Centre d’Assistència Primària ABS Les Corts, CAPSE, Barcelona, Barcelona, Spain, ⁴Department of Internal Medicine, Hospital Alvaro Cunqueiro, Vigo, Vigo, Spain, ⁵Department of Internal Medicine, Hospital Ramón y Cajal, Madrid, Spain, Madrid, Spain, ⁶Department of Internal Medicine, Hospital Universitario Central de Asturias, Oviedo, Oviedo, Spain, ⁷Department of Internal Medicine, Hospital Universitari Joan XXIII, Tarragona, Tarragona, Spain, ⁸Department of Internal Medicine, Hospital Clínico, Zaragoza, Zaragoza, Spain, ⁹Department of Internal Medicine, Hospital Virgen de la Salud, Toledo, Toledo, Spain, ¹⁰Department of Internal Medicine, Hospital Universitario Miguel Servet, Zaragoza, Zaragoza, Spain, ¹¹Department of Internal Medicine, Hospital Son Espases. Palma de Mallorca, Palma de Mallorca, Spain, ¹²Department of Internal Medicine, Hospital Virgen del Rocio, Sevilla, Sevilla, Spain, ¹³Department of Internal Medicine, Hospital Parc Taulí, Sabadell, Sadabell, Spain, ¹⁴Department of Internal Medicine, Hospital de Cabueñes, Gijón, Gijón, Spain, ¹⁵Department of Internal Medicine, Althaia, Xarxa Assistencial de Manresa, Manresa, Spain, ¹⁶Department of Internal Medicine, Hospital Clínico San Cecilio, Granada, Granada, Spain, ¹⁷Department of Internal Medicine, Hospital de Santa Coloma de Gramanet, Barcelona, Barcelona, Spain, ¹⁸Department of Internal Medicine, Hospital General San Jorge, Huesca, Huesca, Spain, ¹⁹Department of Internal Medicine, Hospital de Santa Caterina, Girona, Girona, Spain, ²⁰Department of Internal Medicine, Hospital Virgen Macarena, Sevilla, Sevilla, Spain, ²¹Department of Internal Medicine, Hospital Infanta Sofía, San Sebastián, San Sebastian, Spain, ²²Department of Internal Medicine, Hospital de Poniente El Ejido, Almería, Almería, Spain, ²³Department of Internal Medicine, Hospital Universitario Puerta del Mar, Cádiz, Cadiz, Spain, ²⁴Department of Internal Medicine, Hospital da Barbanza, A Coruña, A Coruña, Spain, ²⁵Department of Internal Medicine, Complejo Hospitalario Albacete, Albacete, Albacete, Spain, ²⁶Department of Internal Medicine, Hospital Gregorio Marañón, Madrid, Madrid, Spain, ²⁷Department of Internal Medicine, Hospital Infanta Leonor, Madrid, Madrid, Spain, ²⁸Department of Internal Medicine, Hospital La Paz, Madrid, Madrid, Spain, ²⁹Department of Internal Medicine, Hospital Valle del Guadiato, Córdoba, Cordoba, Spain, ³⁰Department of Internal Medicine, Parc Sanitari San Joan de Déu, San Boi de Llobregat, Barcelona, Spain, ³¹Department of Internal Medicine, Hospital De Manises, Valencia, Valencia, Spain, ³²Department of Medicine, Hospital CIMA-Sanitas, Barcelona, Barcelona, Spain, ³³Department of Internal Medicine, Hospital Nuestra Señora del Prado, Talavera, Talavera, Spain, ³⁴Rheumatology Unit, Hospital Privado Centro Médico de Córdoba, Argentina, Córdoba, Argentina, ³⁵Laboratory of Systemic Autoimmune Diseases “Josep Font”, CELLEX, Institut d’Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS), Department of Systemic Autoimmune Diseases, ICMID, Hospital Clinic, Barcelona, Spain, Barcelona, Spain
Background/Purpose: To characterize the main epidemiological, clinical and radiological features at presentation of sarcoidosis in a large multicenter cohort from Southern Europe. Methods: In January…
Abstract Number: 1406 • 2016 ACR/ARHP Annual Meeting
Towards Harmonized Data Collection in Rheumatoid Arthritis (RA): The EULAR Task Force for Standardizing a Minimum Data Collection for RA Observational Research
Helga Radner¹, Elena Nikiphorou², Katerina Chatzidionysiou³, Laure Gossec⁴, Kimme L. Hyrich⁵, Codruta Zăbălan⁶, Yvonne JL van Eijk-Hustings⁷, Paula Williamson⁸, William G Dixon⁹, Johan Askling¹⁰ and The EULAR Task Force for standardising minimum data collection in Rheumatoid Arthritis observational research, ¹Rheumatology, Medical University of Vienna, Vienna, Austria, ²Whittington Hospital, London, United Kingdom, ³Department of Medicine, Unit of Rheumatology, Department of Medicine Solna, Karolinska University Hospital, Karolinska Institutet, Stockholm, Sweden, ⁴Paris 06 University and AP-HP, Hôpital Pitié Salpêtrière, Paris, France, ⁵Arthritis Research UK Centre for Epidemiology, The University of Manchester, Manchester, United Kingdom, ⁶Romanian League against Rheumatism, BUCHAREST, Romania, ⁷Patient&Care, Maastricht University Medical Centre, Maastricht, Netherlands, ⁸Clinical Trials Research Centre, University of Liverpool, Liverpool, United Kingdom, ⁹Arthritis Research UK Centre for Epidemiology, The University of Manchester, Manchester, Great Britain, ¹⁰Dept. of Medicine, Rheumatology Unit & Clinical Epidemiology Unit, Karolinska Institute, Stockholm, Sweden
Background/Purpose: Collaborative research is compromised by heterogeneity of data collection in observational rheumatoid arthritis (RA) databases. Therefore a EULAR taskforce has been convened to develop…
Abstract Number: 1431 • 2016 ACR/ARHP Annual Meeting
Estimates of Global Status By Physicians and Patients Are More Likely to be Discordant in Osteoarthritis Than in Rheumatoid Arthritis
Isabel Castrejón¹, Joel Block² and Theodore Pincus¹, ¹Rheumatology, Rush University Medical Center, Chicago, IL, ²Division of Rheumatology, Rush University Medical Center, Chicago, IL
Background/Purpose: Concordant 0-10 estimates of global status by physicians (DOCGL) and patients (PATGL) are associated with greater expectations for improvement and better outcomes1, and appear…
Abstract Number: 47 • 2015 ACR/ARHP Annual Meeting
Use of Social Media Data for Comparative Effectiveness and Safety Research: An Example from Rheumatoid Arthritis
Jeffrey R. Curtis^1,2, James Willig³, Monica Safford¹, Joseph Coe⁴, Kaitlin O'Hara⁵ and Rosee Sa'adon⁶, ¹University of Alabama at Birmingham, Birmingham, AL, ²Rheumatology & Immunology, University of Alabama-Birmingham, Birmingham, AL, ³Med - Infectious Diseases, University of Alabama at Birmingham, Birmingham, AL, ⁴Creaky Joints/Global Healthy Living Foundatio, Upper Nyack, NY, ⁵Treato Ltd., Princeton, NJ, ⁶Treato, Ltd., Or-Yehuda, Israel
Background/Purpose: The data sources available to answer comparative effectiveness and safety questions shortly after medication licensure may be limited. Social media may provide a unique…
Abstract Number: 784 • 2015 ACR/ARHP Annual Meeting
Electronic Health Record (EHR) As a Powerful Tool to Establish Clinical Research Lupus Cohorts
Srilatha Kothandaraman¹, Frederick Ramsey², David Fleece³, Aaron Sorenson², Lai Ping⁴, Srikanth Mukkera¹, King Goh¹ and Roberto Caricchio⁵, ¹Rheumatology, Temple University, Philadelphia, PA, ²Clinical Sciences, Temple University, Philadelphia, PA, ³Pediatrics, Temple University, Philadelphia, PA, ⁴Temple University, Philadelphia, PA, ⁵Medicine, Rheumatology, Temple University, Philadelphia, PA
Background/Purpose: Enhancing a typical EHR through implementation and utilization of research-validated instruments is termed Electronic Data Capture (EDC). EDC is found to be more efficient…
Abstract Number: 943 • 2015 ACR/ARHP Annual Meeting
Development of an Internationally Agreed Minimal Dataset for Juvenile Dermatomyositis (JDM) for Clinical and Research Use
Liza J. McCann¹, Lucy R Wedderburn², Clarissa Pilkington³, Adam M. Huber⁴, Angelo Ravelli⁵, Jamie Kirkham⁶, Paula Williamson⁶ and Michael W. Beresford⁷, ¹Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust, Liverpool, United Kingdom, ²Infection, Inflammation and Rheumatology Section, UCL Institute for Child Health, London, United Kingdom, ³Department of Rheumatology, Great Ormond Street Hospital for Children NHS Trust, London, United Kingdom, ⁴Pediatric rheumatology, IWK Health Centre, Halifax, NS, Canada, ⁵Pediatria-II, IRCCS G. Gaslini and University of Genova, Genova, Italy, ⁶Department of Biostatistics, University of Liverpool, MRC North West Hub for Trials Methodology Research, Liverpool, United Kingdom, ⁷Alder Hey Children's NHS Foundation Trust Hospital, Institute of Translational Medicine (Child Health), University of Liverpool, Liverpool, United Kingdom
Background/Purpose: Juvenile dermatomyositis (JDM) is a rare disease. International collaboration is essential for scrutiny of sufficient patient numbers. We aim to develop a core set…
Abstract Number: 1041 • 2013 ACR/ARHP Annual Meeting
Non-Differential Reporting Of Myocardial Infarction To a National Observational Drug Safety Study Using Linked Data: Linkage Of The British Society For Rheumatology Biologics Register For Rheumatoid Arthritis and The Myocardial Ischaemia National Audit Project
Audrey SL Low¹, Deborah P. Symmons^2,3, Mark Lunt², Louise K. Mercer², Christopher Gale^4,5, Kath Watson⁶, British Society for Rheumatology Biologics Registers (BSRBR) Control Centre Consortium¹, William G. Dixon⁷, Kimme L. Hyrich⁸ and On behalf of the BSRBR⁹, ¹Arthritis Research UK Epidemiology Unit, The University of Manchester, Manchester, United Kingdom, ²Arthritis Research UK Centre for Epidemiology, University of Manchester, Manchester, United Kingdom, ³Arthritis Research UK Epidemiology Unit, University of Manchester, Manchester, United Kingdom, ⁴Division of Epidemiology, Centre for Epidemiology and Biostatistics, University of Leeds, Leeds, United Kingdom, ⁵Department of Cardiology,York Teaching Hospital NHS Foundation Trust, York, United Kingdom, ⁶Arthritis Research UK Epidemiology Unit, Arthritis Research UK Epidemiology Unit, The University of Manchester, Manchester, United Kingdom, ⁷The University of Manchester, Manchester, United Kingdom, ⁸Arthritis Research UK Epidemiology Unit, Manchester Academic Health Sciences Centre, Institute of Inflammation and Repair, The University of Manchester, Manchester, United Kingdom, ⁹British Society for Rheumatology, London, United Kingdom
Background/Purpose: The BSRBR-RA was established to compare the long term safety of anti tumour necrosis factor (TNFi) drugs with non-biologic drugs (nbDMARD) in subjects with…

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