Navegando por Palavras-chave "Registry"

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    Critical, issues and needs in management of primary immunodeficiency diseases in Latin America
    (Elsevier B.V., 2011-01-01) Condino-Neto, A.; Franco, J. L.; Trujillo-Vargas, C.; Espinosa-Rosales, F. J.; Leiva, L. E.; Rodriguez-Quiroz, F.; King, A.; Lagos, M.; Oleastro, M.; Bezrodnik, L.; Grumach, A. S.; Costa-Carvalho, B. T. [UNIFESP]; Sorensen, R. U.; Universidade de São Paulo (USP); Univ Antioquia; Inst Nacl Pediat; LSU Hlth Sci Ctr; Hosp Especialidades Ctr Med La Raza; Hosp Ninos Luis Calvo Mackenna; Univ Valparaiso; Hosp Nacl Pediat Prof Dr Juan P Garrahan; Hosp Ninos Dr Ricardo Gutierrez; Universidade Federal de São Paulo (UNIFESP)
    Experts from six Latin American countries met to discuss critical issues and needs in the diagnosis and management of primary immunodeficiency diseases (PIDD). the diagnosis of PIDD is generally made following referral to an immunology centre located in a major city, but many paediatricians and general practitioners are not sufficiently trained to suspect PIDD in the first place. Access to laboratory testing is generally limited, and only some screening tests are typically covered by government health programmes. Specialised diagnostic tests are generally not reimbursed. Access to treatment varies by country reflecting differences in healthcare systems and reimbursement policies. An online PIDD Registry Programme for Latin America has been available since 2009, which will provide information about PIDD epidemiology in the region. Additional collaboration across countries appears feasible in at least two areas: a laboratory network to facilitate the diagnosis of PIDD, and educational programmes to improve PIDD awareness. in total, these collaborations should make it possible to advance the diagnosis and management of PIDD in Latin America. (C) 2010 SEICAP. Published by Elsevier Espana, S.L. All rights reserved.
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    The first Latin American Catheter Ablation Registry
    (Oxford Univ Press, 2015-05-01) Keegan, Roberto; Aguinaga, Luis; Fenelon, Guilherme [UNIFESP]; Uribe, William; Rodriguez Diez, Gerardo; Scanavacca, Mauricio; Patete, Manuel; Zegarra Carhuaz, Ricardo; Labadet, Carlos; De Zuloaga, Claudio; Pozzer, Domingo; Scazzuso, Fernando; SOLAECE Registry Investigators; Hosp Privado Sur; Ctr Privado Cardiol; Universidade Federal de São Paulo (UNIFESP); CES Cardiol & Clin Amer; ISSSTE; Universidade de São Paulo (USP); Unidad Especializada Arritmias; Inst Nacl Cardiovasc INCOR EsSalud; CEMIC; Hosp Nacl Alejandro Posadas; Inst Cardiol Corrientes; Inst Cardiovasc Buenos Aires
    Aims To assess the results of transcatheter ablation of cardiac arrhythmias in Latin America and establish the first Latin American transcatheter ablation registry.Methods and results All ablation procedures performed between 1 January and 31 December 2012 were analysed retrospectively. Data were obtained on the characteristics and resources of participating centres (public or private institution, number of beds, cardiac surgery availability, type of room for the procedures, days per week assigned to electrophysiology procedures, type of fluoroscopy equipment, availability and type of electroanatomical mapping system, intracardiac echo, cryoablation, and number of electrophysiologists) and the results of 17 different ablation substrates: atrio-ventricular node reentrant tachycardia, typical atrial flutter, atypical atrial flutter, left free wall accessory pathway, right free wall accessory pathway, septal accessory pathway, right-sided focal atrial tachycardia, left-sided focal atrial tachycardia, paroxysmal atrial fibrillation, non-paroxysmal atrial fibrillation, atrio-ventricular node, premature ventricular complex, idiopathic ventricular tachycardia, post-myocardial infarction ventricular tachycardia, ventricular tachycardia in chronic chagasic cardiomyopathy, ventricular tachycardia in congenital heart disease, and ventricular tachycardias in other structural heart diseases. Data of 15 099 procedures were received from 120 centres in 13 participating countries (Argentina, Bolivia, Brazil, Chile, Colombia, Cuba, El Salvador, Guatemala, Mexico, Peru, Dominican Republic, Uruguay, and Venezuela). Accessory pathway was the group of arrhythmias most frequently ablated (31%), followed by atrio-ventricular node reentrant tachycardia (29%), typical atrial flutter (14%), and atrial fibrillation (11%). Overall success was 92% with the rate of global complications at 4% and mortality 0.05%.Conclusion Catheter ablation in Latin America can be considered effective and safe.
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    Perfil de especialistas e de serviços em reumatologia pediátrica no estado de São Paulo
    (Sociedade Brasileira de Reumatologia, 2013-08-01) Terreri, Maria Teresa Ramos Ascensão [UNIFESP]; Campos, Lúcia Maria Mattei de Arruda; Okuda, Eunice Mitiko; Silva, Clovis Artur Almeida da; Sacchetti, Silvana Brasilia; Marini, Roberto; Ferriani, Virginia Paes Leme [UNIFESP]; Ventura, Maria Heloiza; Fernandes, Taciana; Sato, Juliana de Oliveira; Fernandes, Elizabeth C.; Len, Claudio Arnaldo [UNIFESP]; Barbosa, Cassia Maria Passarelli Lupoli [UNIFESP]; Lotito, Ana Paola; Santos, Maria Carolina dos; Aikawa, Nádia Emi; Facó, Mércia; Piotto, Daniela Gerent Petry [UNIFESP]; Bugni, Vanessa [UNIFESP]; Kozu, Kátia Tomie [UNIFESP]; Romanelli, Paulo Roberto Stocco; Sallum, Adriana Maluf Elias; Febronio, Marília; Fraga, Melissa [UNIFESP]; Magalhães, Cláudia Saad; Universidade Federal de São Paulo (UNIFESP); Universidade de São Paulo (USP); Santa Casa de Misericórdia de São Paulo Departamento de Pediatria Setor de Reumatologia; Universidade Estadual de Campinas (UNICAMP); Santa Casa de Misericórdia de Santos Setor de Reumatologia Pediátrica; Faculdade de Medicina de Botucatu Hospital Estadual de Bauru Serviço de Reumatologia Pediátrica; Faculdade de Medicina de Botucatu
    INTRODUCTION: Paediatric rheumatology (PR) is an emerging specialty, practised by a limited number of specialists. Currently, there is neither a record of the profile of rheumatology patients being treated in Brazil nor data on the training of qualified rheumatology professionals in the country. OBJECTIVE: To investigate the profile of PR specialists and services, as well as the characteristics of paediatric patients with rheumatic diseases, for estimating the current state of rheumatology in the state of São Paulo. PATIENTS AND METHODS: In 2010, the scientific department of PR of the Paediatric Society of São Paulo administered a questionnaire that was answered by 24/31 accredited specialists in PR practising in state of São Paulo and by 8/21 institutions that provide PR care. RESULTS: Most (91%) of the surveyed professionals practise in public institutions. Private clinics (28.6%) and public institutions (37.5%) reported not having access to nailfold capillaroscopy, and 50% of the private clinics reported not having access to acupuncture. The average duration of professional practise in PR was 9.4 years, and 67% of the physicians had attended postgraduate programmes. Seven (87.5%) public institutions perform teaching activities, in which new paediatric rheumatologists are trained, and five (62.5%) offer postgraduate programmes. Two-thirds of the surveyed specialists use immunosuppressants and biological agents classified as restricted use by the Health Secretariat. The disease most frequently reported was juvenile idiopathic arthritis (29.1-34.5%), followed by juvenile systemic lupus erythematosus (JSLE) (11.6-12.3%) and rheumatic fever (9.1-15.9%). The incidence of vasculitis (including Henoch-Schönlein purpura, Wegener's granulomatosis, and Takayasu's arteritis) and autoinflammatory syndromes was higher in public institutions compared to other institutions (P = 0.03, P = 0.04, P = 0.002, and P < 0.0001, respectively). Patients with JSLE had the highest mortality rate (68% of deaths), mainly due to infection. CONCLUSION: The field of PR in the state of São Paulo has a significant number of specialists with postgraduate degrees who mostly practise at teaching institutions with infrastructures appropriate for the care of high-complexity patients.
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    Primary immunodeficiency diseases in Latin America: Proceedings of the Second Latin American Society for Immunodeficiencies (LASID) Advisory Board
    (Elsevier B.V., 2011-03-01) Leiva, L. E.; Bezrodnik, L.; Oleastro, M.; Condino-Neto, A.; Costa-Carvalho, B. T. [UNIFESP]; Sevciovic Grumach, A.; Espinosa-Rosales, F. J.; Luis Franco, J.; King, A.; Inostroza, J.; Quezada, A.; Porras, O.; Sorensen, R. U.; Universidade de São Paulo (USP); LSU Hlth Sci Ctr; Hosp Ninos Dr Ricardo Gutierrez; Hosp Nacl Pediat Prof Dr Juan P Garrahan; Universidade Federal de São Paulo (UNIFESP); Fac Med ABC; Ctr Dis Control Immunizat; Inst Nacl Pediat; Univ Antioquia; Hosp Ninos Luis Calvo Mackenna; Univ La Frontera; Hosp E Gonzalez Cortes; Hosp Nacl Ninos Dr Carlos Saenz Herrera
    Early diagnosis and appropriate therapy are essential for the best prognosis and quality of life in patients with primary immunodeficiency diseases (PIDDs). Experts from several Latin American countries have been meeting on a regular basis as part of an ongoing effort to improve the diagnosis and treatment of PIDD in this region. Three programmes are in development that will expand education and training and improve access to testing facilities throughout Latin America. These programmes are: an educational outreach programme (The L-Project); an immunology fellowship programme; and the establishment of a laboratory network to expand access to testing facilities. This report provides the status of these programmes based on the most recent discussions and describes the next steps toward full implementation of these programmes. (C) 2010 SEICAP. Published by Elsevier Espana, S.L. All rights reserved.
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    Source document verification in the Mucopolysaccharidosis Type I Registry
    (Wiley-Blackwell, 2012-07-01) Verhulst, Karien; Artiles-Carloni, Laura; Beck, Michael; Clarke, Joe T. R.; Correa Neto, Jordao; Cox, Gerald F.; Fernhoff, Paul M.; Guffon, Nathalie; Kong, Yuan; Martins, Ana Maria [UNIFESP]; Tylki-Szymanska, Anna; Whitley, Chester B.; Wijburg, Frits A.; Wraith, Edward J.; Koepper, Catherine M.; Genzyme Corp; Genzyme Europe BV; Johannes Gutenberg Univ Mainz; Hosp Sick Children; Pontificia Univ Catolica Campinas; Childrens Hosp Boston; Harvard Univ; Emory Univ; Hop Femme Mere Enfant; Universidade Federal de São Paulo (UNIFESP); Childrens Mem Hlth Inst; Univ Minnesota; Univ Amsterdam; St Marys Hosp
    Purpose the Mucopolysaccharidosis Type I (MPS I) Registry is an international observational database that tracks the natural history and the outcomes of patients with MPS I. the Registry was a regulatory requirement following the approval of laronidase enzyme replacement therapy for MPS I in 2003. All data are collected voluntarily after informed consent from the patient or family. Data are checked through queries, monthly reviews, and electronic audits to identify missing, inconsistent, or invalid data. This analysis sought to determine overall data accuracy in the Registry through source document verification (SDV). Methods Two phases of SDV were performed. in each phase, Registry data were compared against source documents at sites in Europe, Latin America, and North America. Three patients were randomly selected for SDV at each of the selected sites among all patients enrolled =18?months and ever receiving laronidase. Key parameters central to MPS I and its treatment were examined from the baseline and the last available assessments. Results Results indicate an overall source-to-database error rate in the MPS I Registry of 2.7% (47 discrepancies out of 1715 items; 95% confidence interval [2.2%, 3.5%]) in Phase?1 and 3.7% (64 discrepancies out of 1732 items; 95% confidence interval [2.9%, 4.7%]) in Phase?2. No systematic errors were found. Conclusions the overall error rates in both phases of SDV demonstrate acceptable data accuracy in the MPS I Registry within the data fields that were assessed. Copyright (c) 2011 John Wiley & Sons, Ltd.