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patient registries

Poul Jennum, Anne Sabers, Jakob Christensen, Rikke Ibsen, Jakob Kjellberg
PURPOSE: Epilepsy surgery has been a standard treatment for refractory epilepsies that cannot be controlled by standard medical treatment. We aimed to evaluate the health and social consequences of resective surgery relative to controls from a study of national data. METHODS: Using the Danish National Patient Registry we identified all subjects with an epilepsy diagnosis between 1996 and 2009 and compared them with a group of patients with an epilepsy diagnosis who had had neither epilepsy surgery nor a vagus stimulation diagnosis by the index date, and who were matched by gender, index year for epilepsy diagnosis, and index year for epilepsy surgery...
October 6, 2016: Seizure: the Journal of the British Epilepsy Association
Elizabeth Hammond, Emma Shu, Karagin Sawchuk, Yvonne Myal, Afshin Raouf, Thomas Klonisch, Sabine Hombach-Klonisch, Etienne Leygue, Sam Kung, Janice Safneck, Michael Mowat, Wayne Xu, Leigh Murphy, Marshall Pitz
BACKGROUND: Few descriptive epidemiological studies on the incidence, treatment and survival can accurately reflect a whole population. Manitoba, Canada has an accurate cancer registry, a drug information program network and a breast screening program since 1995. This combined with a stable population provides true population data that can accurately describe the region. METHODS: Using a retrospective cohort design all Breast Cancer cases were obtained from 2004-2010 (N=5399) and grouped by Intrinsic sub-type...
October 19, 2016: Cancer Epidemiology
Daniel Cherqui, Go Wakabayashi, David A Geller, Joseph F Buell, Ho-Seong Han, Olivier Soubrane, Nicholas O'Rourke
In this article, we present the rationale for creating a new society aiming at organizing laparoscopic liver surgery. It has been named International Laparoscopic Liver Society (ILLS). Its main mission is to facilitate the diffusion and education of laparoscopic liver resection for meaningful improvements in patient care. This will include organization of a biannual congress dedicated to laparoscopic liver resection, coordination of international registries, helping in the education of surgeons wishing to learn these techniques including travel grants, provide a website serving as a forum supporting collaboration between surgeons interested in the advancement of laparoscopic liver resection techniques (http://www...
October 21, 2016: Journal of Hepato-biliary-pancreatic Sciences
Pat Whitworth, Peter Beitsch, Angela Mislowsky, James V Pellicane, Charles Nash, Mary Murray, Laura A Lee, Carrie L Dul, Michael Rotkis, Paul Baron, Lisette Stork-Sloots, Femke A de Snoo, Jennifer Beatty
PURPOSE: Hormone receptor-positive (HR+) tumors have heterogeneous biology and present a challenge for determining optimal treatment. In the Neoadjuvant Breast Registry Symphony Trial (NBRST) patients were classified according to MammaPrint/BluePrint subtyping to provide insight into the response to neoadjuvant endocrine therapy (NET) or neoadjuvant chemotherapy (NCT). OBJECTIVE: The purpose of this predefined substudy was to compare MammaPrint/BluePrint with conventional 'clinical' immunohistochemistry/fluorescence in situ hybridization (IHC/FISH) subtyping in 'clinical luminal' [HR+/human epidermal growth factor receptor 2-negative (HER2-)] breast cancer patients to predict treatment sensitivity...
October 21, 2016: Annals of Surgical Oncology
Malin E M Mörner, Gustaf Edgren, Anna Martling, Ulf Gunnarsson, Monika Egenvall
PURPOSE: The hypothesis in this study was that anaemia prior to surgery and perioperative red blood cell transfusion increases the risk for recurrence and overall mortality in patients with stages I-III colorectal cancer after abdominal resection with curative intent. METHODS: This is a Swedish single centre retrospective cohort study. Data on 496 consecutive radical abdominal resections stages I-III colorectal cancer performed at the Karolinska University Hospital 2007-2010 were extracted from the Swedish Colorectal Cancer Registry...
October 21, 2016: International Journal of Colorectal Disease
C T Lau, A Kan, N Shek, P Tam, K K Y Wong
BACKGROUND: Congenital pulmonary airway malformation (CPAM) is an increasingly recognized disease with potential mortality. Owing to limited published studies, the true incidence is yet to be determined. We carried out this prospective study with the aim to estimate its true incidence on a population basis. METHODS: An antenatal ultrasonography program was implemented since 2009. Fetuses with suspected intra-thoracic lesions were monitored by regular follow-ups...
October 21, 2016: Pediatric Surgery International
Daniel S Olsson, Penelope Trimpou, Tobias Hallén, Ing-Liss Bryngelsson, Eva Andersson, Thomas Skoglund, Bengt-Åke Bengtsson, Gudmundur Johannsson, Anna G Nilsson
Hypopituitarism has been associated with an increased mortality, which may be due to untreated growth hormone (GH) deficiency but also to the various underlying disorders. We therefore analysed mortality in patients with only one underlying disorder, non-functioning pituitary adenoma (NFPA), with and without GH replacement therapy (GHRT). Patients with NFPA in the western region of Sweden, 1997-2011, were identified through the National Patient Registry and cross-referenced with several National Health Registries...
October 21, 2016: European Journal of Endocrinology
Amirabbas Azizi, Robab Aboutorabi, Zahra Mazloum-Khorasani, Monavar Afzal-Aghaea, Hamed Tabesh, Mahmood Tara
BACKGROUND: There are 4 main types of chronic or noncommunicable diseases. Of these, diabetes is one of the major therapeutic concerns globally. Moreover, Iran is among the countries with the highest incidence of diabetic patients. Furthermore, library-based studies by researchers have shown that thus far no study has been carried out to evaluate the relationship between Web-based diabetic personal health records (DPHR) and self-care indicators in Iran. OBJECTIVE: The objective of this study is to examine the effect of Web-based DPHR on self-care status of diabetic patients in an intervention group as compared with a control group...
October 21, 2016: JMIR Medical Informatics
Janette Kwok, Mengbiao Guo, Wanling Yang, C K Lee, Jenny Ho, W H Tang, Y S Chan, Derek Middleton, L W Lu, Godfrey C F Chan
HLA-A, -B, -C and -DRB1 gene and haplotype frequencies have been calculated from 7595 southern Chinese unrelated donors in a Hong Kong Bone Marrow Donor Registry. This is the first large-scale paper to report the distribution of A-C-B-DRB1 alleles in Hong Kong Chinese. This information is important for phylogenetic, comparative studies and estimating the optimal and cost-effective donor size and likelihood of obtaining appropriately matched donors for Chinese patients awaiting haematopoietic stem cell transplantation...
October 18, 2016: Human Immunology
Janette Kwok, Mengbiao Guo, Wanling Yang, C K Lee, N K Chan, Jenny Ho, W H Tang, Y S Chan, Derek Middleton, L W Lu, Godfrey C F Chan
HLA-A, -B and -DRB1 gene and haplotype frequencies have been calculated from 3892 southern Chinese unrelated cord blood units in a Hong Kong Cord Blood Registry. This is the first large-scale paper to report the distribution of A-B-DRB1 alleles in Hong Kong Chinese Cord Blood Units. This information is important for estimating the optimal and economically cost-effective donor size and likelihood of obtaining appropriately matched cord blood units for Chinese patients awaiting haematopoietic stem cell transplantation...
October 18, 2016: Human Immunology
Birga Maier, Katrin Wagner, Steffen Behrens, Leonhard Bruch, Reinhard Busse, Dagmar Schmidt, Helmut Schühlen, Roland Thieme, Heinz Theres
BACKGROUND: Assessment of quality of care in patients with myocardial infarction (MI) should be based on data that effectively enable determination of quality. With the need to simplify measurement techniques, the question arises whether routine data can be used for this purpose. We therefore compared data from a German sickness fund (AOK) with data from the Berlin Myocardial Infarction Registry (BMIR). METHODS: We included patients hospitalised for treatment of MI in Berlin from 2009-2011...
October 21, 2016: BMC Health Services Research
David J Pulford, Philipp Harter, Anne Floquet, Catherine Barrett, Dong Hoon Suh, Michael Friedlander, José Angel Arranz, Kosei Hasegawa, Hiroomi Tada, Peter Vuylsteke, Mansoor R Mirza, Nicoletta Donadello, Giovanni Scambia, Toby Johnson, Charles Cox, John K Chan, Martin Imhof, Thomas J Herzog, Paula Calvert, Pauline Wimberger, Dominique Berton-Rigaud, Myong Cheol Lim, Gabriele Elser, Chun-Fang Xu, Andreas du Bois
BACKGROUND: The focus on translational research in clinical trials has the potential to generate clinically relevant genetic data that could have importance to patients. This raises challenging questions about communicating relevant genetic research results to individual patients. METHODS: An exploratory pharmacogenetic analysis was conducted in the international ovarian cancer phase III trial, AGO-OVAR 16, which found that patients with clinically important germ-line BRCA1/2 mutations had improved progression-free survival prognosis...
October 21, 2016: BMC Medical Ethics
Hui Miao, Mikael Hartman, Helena M Verkooijen, Nur Aishah Taib, Hoong-Seam Wong, Shridevi Subramaniam, Cheng-Har Yip, Ern-Yu Tan, Patrick Chan, Soo-Chin Lee, Nirmala Bhoo-Pathy
BACKGROUND: CancerMath is a set of web-based prognostic tools which predict nodal status and survival up to 15 years after diagnosis of breast cancer. This study validated its performance in a Southeast Asian setting. METHODS: Using Singapore Malaysia Hospital-Based Breast Cancer Registry, clinical information was retrieved from 7064 stage I to III breast cancer patients who were diagnosed between 1990 and 2011 and underwent surgery. Predicted and observed probabilities of positive nodes and survival were compared for each subgroup...
October 21, 2016: BMC Cancer
Wen Yea Hwong, Michiel L Bots, Sharmini Selvarajah, L Jaap Kappelle, Zariah Abdul Aziz, Norsima Nazifah Sidek, Ilonca Vaartjes
BACKGROUND: A shortage of computed tomographic (CT) machines in low and middle income countries often results in delayed CT imaging for patients suspected of a stroke. Yet, time constraint is one of the most important aspects for patients with an ischemic stroke to benefit from thrombolytic therapy. We set out to assess whether application of the Siriraj Stroke Score is able to assist physicians in prioritizing patients with a high probability of having an ischemic stroke for urgent CT imaging...
2016: PloS One
Pirow Bekker, Daniel Dairaghi, Lisa Seitz, Manmohan Leleti, Yu Wang, Linda Ertl, Trageen Baumgart, Sarah Shugarts, Lisa Lohr, Ton Dang, Shichang Miao, Yibin Zeng, Pingchen Fan, Penglie Zhang, Daniel Johnson, Jay Powers, Juan Jaen, Israel Charo, Thomas J Schall
The complement 5a receptor has been an attractive therapeutic target for many autoimmune and inflammatory disorders. However, development of a selective and potent C5aR antagonist has been challenging. Here we describe the characterization of CCX168 (avacopan), an orally administered selective and potent C5aR inhibitor. CCX168 blocked the C5a binding, C5a-mediated migration, calcium mobilization, and CD11b upregulation in U937 cells as well as in freshly isolated human neutrophils. CCX168 retains high potency when present in human blood...
2016: PloS One
Pauline K Park, Jeremy W Cannon, Wen Ye, Lorne H Blackbourne, John B Holcomb, William Beninati, Lena M Napolitano
BACKGROUND: The overall incidence and mortality of acute respiratory distress syndrome (ARDS) in civilian trauma settings have decreased over the past four decades; however, the epidemiology and impact of ARDS on modern combat casualty care are unknown. We sought to determine the incidence, risk factors, resource utilization, and mortality associated with ARDS in current combat casualty care. METHODS: This was a retrospective review of mechanically ventilated US combat casualties within the Department of Defense Trauma Registry (formerly the Joint Theater Trauma Registry) during Operation Iraqi Freedom/Enduring Freedom (October 2001 to August 2008) for ARDS development, resource utilization, and mortality...
November 2016: Journal of Trauma and Acute Care Surgery
Nina S Nnamani, Judson C Janak, Steven J Hudak, Jessica C Rivera, Eluned A Lewis, Douglas W Soderdahl, Jean A Orman
BACKGROUND: In Operation Enduring Freedom and Operation Iraqi Freedom (OEF/OIF), genitourinary (GU) wounds have occurred in unprecedented numbers. Severe concomitant injuries, including extremity amputations, are common. The epidemiology of GU injury and extremity amputation in OEF/OIF has not been described. MATERIALS AND METHODS: The Department of Defense Trauma Registry was queried from October 2001 through August 2013 to identify all surviving US male service members with GU injuries sustained in OEF/OIF...
November 2016: Journal of Trauma and Acute Care Surgery
Jayme E Locke, Sally Gustafson, Shikha Mehta, Rhiannon D Reed, Brittany Shelton, Paul A MacLennan, Christine Durand, Jon Snyder, Nicholas Salkowski, Allan Massie, Deirdre Sawinski, Dorry L Segev
OBJECTIVE: To determine the survival benefit of kidney transplantation in human immunodeficiency virus (HIV)-infected patients with end-stage renal disease (ESRD). SUMMARY BACKGROUND DATA: Although kidney transplantation (KT) has emerged as a viable option for select HIV-infected patients, concerns have been raised that risks of KT in HIV-infected patients are higher than those in their HIV-negative counterparts. Despite these increased risks, KT may provide survival benefit for the HIV-infected patient with ESRD, yet this important clinical question remains unanswered...
April 26, 2016: Annals of Surgery
Vesela Ivanova, Tihomir Dikov, Nadya Dimitrova
PURPOSE: To provide an overview of the morphologic subtypes of ovarian carcinomas in Bulgaria in relation to current healthcare organization using Bulgarian National Cancer Registry data. Further, we investigated hospital volume as a factor influencing the quality of care for patients with ovarian cancer. METHODS: Bulgarian National Cancer Registry ovarian carcinoma data were retrieved (2009-2011) and distribution of histologic types was analyzed. Cases were divided and compared with respect to main treatment: no surgery, surgery at hospitals dealing with ≥30 ovarian cancer patients/year (high volume), and surgery at hospitals dealing with <30 ovarian cancer patients/year (low volume)...
October 8, 2016: Tumori
C Jason Wang, Skye H Cheng, Jen-You Wu, Yi-Ping Lin, Wen-Hsin Kao, Chia-Li Lin, Yin-Jou Chen, Shu-Ling Tsai, Feng-Yu Kao, Andrew T Huang
Importance: Value-driven payment system reform is a potential tool for aligning economic incentives with the improvement of quality and efficiency of health care and containment of cost. Such a payment system has not been researched satisfactorily in full-cycle cancer care. Objective: To examine the association of outcomes and medical expenditures with a bundled-payment pay-for-performance program for breast cancer in Taiwan compared with a fee-for-service (FFS) program...
October 20, 2016: JAMA Oncology
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