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https://www.readbyqxmd.com/read/28641357/-the-german-thorax-registry-implementation-of-an-established-tool-of-perioperative-health-care-research
#1
Jérôme Defosse, Mark Schieren, Torsten Loop, Cerstin Arndt, Rainer Röhrig, Erich Stoelben, Corinna Ludwig, Alexander Schleppers, Frank Wappler, Mark Gerbershagen, Alberto Lopez-Pastorini
The collection of clinical treatment data in registry databases is an important aspect of health services research. It allows for a critical evaluation of the safety, efficacy and cost-effectiveness of clinical treatment concepts in large patient populations. The findings of registry research represent real-world patients and treatment structures as they are not limited by strict inclusion criteria or unrealistic conditions as applied in prospective clinical trials. The implementation of the German Thorax Registry has enabled the collection and analysis of data on the interdisciplinary care (thoracic surgery, anaesthesiology, intensive care, pain management) of patients undergoing thoracic surgery...
June 2017: Zentralblatt Für Chirurgie
https://www.readbyqxmd.com/read/28637220/temporal-changes-in-health-within-5-years-before-and-after-disability-pension-the-hunt-study
#2
Gunnhild Åberge Vie, Kristine Pape, Steinar Krokstad, Roar Johnsen, Johan Håkon Bjørngaard
Background: Health status has been reported to change before, during and after disability pension receipt. These associations might be subject to temporal changes according to changes in policy, incidence of disability pensions and other contextual factors. We compared the perceived health around time of disability retirement among persons receiving disability pension in the 1990 s and 2000 s in Norway. Methods: We linked data from two consecutive cross-sectional population based Norwegian health surveys, HUNT2 (1995-97) and HUNT3 (2006-08), to national registries, identifying those who received disability pension within 5 years before or after participation in the survey (HUNT2: n = 5362, HUNT3: n = 4649)...
June 20, 2017: European Journal of Public Health
https://www.readbyqxmd.com/read/28635973/deconstructing-decisions-to-initiate-maintain-or-discontinue-adjuvant-endocrine-therapy-in-breast-cancer-survivors-a-mixed-methods-study
#3
Shirley M Bluethmann, Caitlin C Murphy, Jasmin A Tiro, Michelle A Mollica, Sally W Vernon, Leona Kay Bartholomew
PURPOSE/OBJECTIVES: Adjuvant endocrine therapy (AET) has been shown to improve survival in hormone receptor-positive breast cancer survivors, but as many as half do not complete recommended treatment. Management of medication-related side effects and engagement with providers are two potentially modifiable factors, but their associations with adherence are not well understood. The aims were to build on survey results to qualitatively explore survivors' experiences with prescribed AET to (a) describe appraisal and management of AET side effects and (b) deconstruct decisions to initiate, discontinue, or maintain AET...
May 1, 2017: Oncology Nursing Forum
https://www.readbyqxmd.com/read/28634652/a-multi-source-approach-to-determine-sma-incidence-and-research-ready-population
#4
Ingrid E C Verhaart, Agata Robertson, Rebecca Leary, Grace McMacken, Kirsten König, Janbernd Kirschner, Cynthia C Jones, Suzanne F Cook, Hanns Lochmüller
In spinal muscular atrophy (SMA), degeneration of motor neurons causes progressive muscular weakness, which is caused by homozygous deletion of the SMN1 gene. Available epidemiological data on SMA are scarce, often outdated, and limited to relatively small regions or populations. Combining data from different sources including genetic laboratories and patient registries may provide better insight of the disease epidemiology. To investigate the incidence of genetically confirmed SMA, and the number of patients who are able and approachable to participate in new clinical trials and observational research, we used both genetic laboratories, the TREAT-NMD Global SMA Patient Registry and the Care and Trial Sites Registry (CTSR)...
June 20, 2017: Journal of Neurology
https://www.readbyqxmd.com/read/28632866/risks-of-breast-ovarian-and-contralateral-breast-cancer-for-brca1-and-brca2-mutation-carriers
#5
Karoline B Kuchenbaecker, John L Hopper, Daniel R Barnes, Kelly-Anne Phillips, Thea M Mooij, Marie-José Roos-Blom, Sarah Jervis, Flora E van Leeuwen, Roger L Milne, Nadine Andrieu, David E Goldgar, Mary Beth Terry, Matti A Rookus, Douglas F Easton, Antonis C Antoniou, Lesley McGuffog, D Gareth Evans, Daniel Barrowdale, Debra Frost, Julian Adlard, Kai-Ren Ong, Louise Izatt, Marc Tischkowitz, Ros Eeles, Rosemarie Davidson, Shirley Hodgson, Steve Ellis, Catherine Nogues, Christine Lasset, Dominique Stoppa-Lyonnet, Jean-Pierre Fricker, Laurence Faivre, Pascaline Berthet, Maartje J Hooning, Lizet E van der Kolk, Carolien M Kets, Muriel A Adank, Esther M John, Wendy K Chung, Irene L Andrulis, Melissa Southey, Mary B Daly, Saundra S Buys, Ana Osorio, Christoph Engel, Karin Kast, Rita K Schmutzler, Trinidad Caldes, Anna Jakubowska, Jacques Simard, Michael L Friedlander, Sue-Anne McLachlan, Eva Machackova, Lenka Foretova, Yen Y Tan, Christian F Singer, Edith Olah, Anne-Marie Gerdes, Brita Arver, Håkan Olsson
Importance: The clinical management of BRCA1 and BRCA2 mutation carriers requires accurate, prospective cancer risk estimates. Objectives: To estimate age-specific risks of breast, ovarian, and contralateral breast cancer for mutation carriers and to evaluate risk modification by family cancer history and mutation location. Design, Setting, and Participants: Prospective cohort study of 6036 BRCA1 and 3820 BRCA2 female carriers (5046 unaffected and 4810 with breast or ovarian cancer or both at baseline) recruited in 1997-2011 through the International BRCA1/2 Carrier Cohort Study, the Breast Cancer Family Registry and the Kathleen Cuningham Foundation Consortium for Research into Familial Breast Cancer, with ascertainment through family clinics (94%) and population-based studies (6%)...
June 20, 2017: JAMA: the Journal of the American Medical Association
https://www.readbyqxmd.com/read/28632830/-declaration-of-the-chilean-academy-of-medicine-of-law-20-850-on-clinical-trials-of-pharmaceutical-products-and-medical-devices-and-of-the-bylaw-that-will-regulate-its-application
#6
Gloría López, Gloría Valdés, Emilio Roessler, Vicente Valdivieso
In Chile, high cost treatments required by selected medical conditions are financed by the State, according to Law 20.850. A bylaw under discussion by the Senate regulates clinical trials, posing complex issues that will endanger local interest in front-line research: 1) The exclusive and mandatory control bestowed to the Institute of Public Health during all stages of the trials and also the surveillance of institutions performing clinical trials, overriding their Clinical Research Review Boards; 2) The 10 year period during which any adverse event is assumed to have been caused by the medication or devise evaluated by the trial, unless the contrary is proven in a judicial process; 3) Individuals submitted to the trials are entitled to free post trial access to the treatment received during the study, financed by the trial supporting entities and as long as the drug or devise is considered to be useful...
April 2017: Revista Chilena de Infectología: órgano Oficial de la Sociedad Chilena de Infectología
https://www.readbyqxmd.com/read/28631772/-regional-cancer-registries-as-observational-points-for-clinical-pathways-in-oncological-networks
#7
Salvatore Palazzo, Lucia Mangone
Regional Cancer Registries collect population data on incidence and survival for all forms of cancer on a national scale, providing basic elements for National and Regional Health Planning. The availability of the reliable and homogeneous measurement elements about patient outcomes is the key to improving quality and assessing the efficiency of the national healthcare. These measurement elements can be aggregated into predefined indicators for the clinical pathways of the individual regions to calculate their value and assess the phenomenon of health migration...
June 2017: Recenti Progressi in Medicina
https://www.readbyqxmd.com/read/28631153/lung-cancer-in-the-oldest-old-a-nation-wide-study-in-the-netherlands
#8
Karlijn J G Schulkes, Carin A M Pouw, Elisabeth J M Driessen, Leontine J R van Elden, Frederiek van den Bos, Maryska L G Janssen-Heijnen, Jan-Willem J Lammers, Marije E Hamaker
INTRODUCTION: An important step in improving research and care for the oldest patients with lung cancer is analyzing current data regarding diagnostic work-up, treatment choices, and survival. METHODS: We analyzed data on lung cancer from the Netherlands Cancer Registry (NCR-IKNL) regarding diagnostic work-up, treatment, and survival in different age categories; the oldest old (≥85 years of age) versus those aged 71-84 (elderly) and those aged ≤70 years (younger patients)...
June 19, 2017: Lung
https://www.readbyqxmd.com/read/28630739/danish-hip-arthroscopy-registry-dhar-the-outcome-of-patients-with-femoroacetabular-impingement-fai
#9
Bent Lund, Bjarne Mygind-Klavsen, Torsten Grønbech Nielsen, Niels Maagaard, Otto Kraemer, Per Hölmich, Søren Winge, Martin Lind
The Danish Hip Arthroscopy Registry (DHAR) was initiated in January 2012 as a web-based prospective registry. The purpose of this study was to evaluate and report the first registry based outcome data of a national population with radiological and clinical femoroacetabular impingement (FAI) undergoing hip arthroscopic treatment. Our primary hypothesis was that patients undergoing hip arthroscopy would improve significantly in pain, quality of life and sports related outcome measurements in Patient Related Outcome Measures (PROM)...
July 2017: Journal of Hip Preservation Surgery
https://www.readbyqxmd.com/read/28629471/improving-child-nutrition-and-development-through-community-based-childcare-centres-in-malawi-the-neep-ie-study-study-protocol-for-a-randomised-controlled-trial
#10
Aulo Gelli, Amy Margolies, Marco Santacroce, Katie Sproule, Sophie Theis, Natalie Roschnik, Aisha Twalibu, George Chidalengwa, Amrik Cooper, Tyler Moorhead, Melissa Gladstone, Patricia Kariger, Mangani Kutundu
BACKGROUND: The Nutrition Embedded Evaluation Programme Impact Evaluation (NEEP-IE) study is a cluster randomised controlled trial designed to evaluate the impact of a childcare centre-based integrated nutritional and agricultural intervention on the diets, nutrition and development of young children in Malawi. The intervention includes activities to improve nutritious food production and training/behaviour-change communication to improve food intake, care and hygiene practices. This paper presents the rationale and study design for this randomised control trial...
June 19, 2017: Trials
https://www.readbyqxmd.com/read/28628578/neuraxial-anesthesia-in-obstetric-patients-receiving-thromboprophylaxis-with-unfractionated-or-low-molecular-weight-heparin-a-systematic-review-of-spinal-epidural-hematoma
#11
Lisa R Leffert, Heloise M Dubois, Alexander J Butwick, Brendan Carvalho, Timothy T Houle, Ruth Landau
Venous thromboembolism remains a major source of morbidity and mortality in obstetrics with an incidence of 29.8/100,000 vaginal delivery hospitalizations; cesarean delivery confers a 4-fold increased risk of thromboembolism when compared with vaginal delivery. Revised national guidelines now stipulate that the majority of women delivering via cesarean and women at risk for ante- or postpartum venous thromboembolism receive mechanical or pharmacological thromboprophylaxis. This practice change has important implications for obstetric anesthesiologists concerned about the risk of spinal epidural hematoma (SEH) among anticoagulated women receiving neuraxial anesthesia...
July 2017: Anesthesia and Analgesia
https://www.readbyqxmd.com/read/28628566/immediate-impact-of-centralization-on-abdominal-aortic-aneurysm-repair-outcomes-for-a-vascular-network-in-the-south-west-of-england-a-retrospective-cohort-study
#12
Philippa Leighton, Matthew Doe, Samir Pathak, Abdullah AlDuwaisan, Marcus Brooks
OBJECTIVE: Our aim was to assess the short-term impact of centralization on the outcomes of patients undergoing abdominal aortic aneurysm repair in a vascular network in the South West of England. BACKGROUND: The centralization of vascular services has been implemented nationally across the National Health Service to improve patient outcomes. The full impact of these major changes has not yet been fully analyzed. METHODS: A retrospective cohort study examining outcomes of patients undergoing abdominal aortic aneurysm repair, based on prospectively entered National Vascular Registry data, pre and post centralization in the South West of England...
June 16, 2017: Annals of Surgery
https://www.readbyqxmd.com/read/28628467/juvenile-and-adult-onset-systemic-lupus-erythematosus-a-comparative-study-in-a-large-cohort-from-the-spanish-society-of-rheumatology-lupus-registry-relesser
#13
Vicenç Torrente-Segarra, Tarek Carlos Salman Monte, Iñigo Rúa-Figueroa, Fernando Sánchez-Alonso, Francisco Javier López-Longo, María Galindo-Izquierdo, Jaime Calvo-Alén, Alejandro Olivé-Marqués, Jesús Ibañez-Ruán, Loreto Horcada, Ana Sánchez-Atrio, Carlos Montilla, Rafael Benito Melero González, Elvira Díez-Álvarez, Victor Martinez-Taboada, José Luis Andreu, Olaia Fernández-Berrizbeitia, José Ángel Hernández-Beriain, Marian Gantes, Blanca Hernández-Cruz, Ángela Pecondón-Español, Carlos Marras, Gema Bonilla, José M Pego-Reigosa
OBJECTIVES: We aimed to describe juvenile-onset systemic lupus erythematosus (jSLE) features and to establish its differences compared to adult-onset SLE (aSLE) from a large national database. METHODS: Data from patients (≥4 ACR criteria) included in Spanish Society of Rheumatology Lupus Registry (RELESSER) were analysed. Sociodemographic, clinical, serological, activity, treatment, cumulative damage, comorbidities and severity data were collected. Patients with disease onset <18 years were described and compared to those with disease onset ≥18 years...
June 12, 2017: Clinical and Experimental Rheumatology
https://www.readbyqxmd.com/read/28627932/short-term-prognostic-effect-of-prior-cerebrovascular-and-peripheral-artery-disease-in-patients-with-acute-coronary-syndrome-can-we-do-better
#14
Filipa Cordeiro, Pedro S Mateus, Alberto Ferreira, Silvia Leao, Miguel Moz, J Ilidio Moreira
BACKGROUND: We sought to evaluate the impact of prior cerebrovascular and/or peripheral arterial disease (PAD) on in-hospital outcomes in patients with acute coronary syndromes. METHODS: From 1 October 2010 to 26 February 2016, 13,904 acute coronary syndrome patients were enrolled in a national multicentre registry. They were divided into four groups: prior stroke/transient ischaemic attack (stroke/TIA); prior PAD; prior stroke/TIA and PAD; none. The endpoints included in-hospital mortality and a composite endpoint of death, re-infarction and stroke during hospitalization...
June 1, 2017: European Heart Journal. Acute Cardiovascular Care
https://www.readbyqxmd.com/read/28626058/risk-of-stroke-with-various-types-of-menopausal-hormone-therapies-a-national-cohort-study
#15
Ellen Løkkegaard, Lars Hougaard Nielsen, Niels Keiding
BACKGROUND AND PURPOSE: Double-blind randomized studies on the effects of oral postmenopausal hormone therapies were stopped mainly because of increased risk of stroke. We aimed to assess the risk of all strokes and various subtypes associated with hormone therapy and explore the influence of regimens and routes of administration. METHODS: A national historical cohort of women aged 51 to 70 years from 1995 to 2010 was established by linking 5 Danish registries. The National Registry of Medicinal Product Statistics provided information on hormone therapy exposure and the National Patient or Cause of Death Registries supplied data regarding stroke diagnoses (ischemic/hemorrhagic/subarachnoid hemorrhage)...
June 16, 2017: Stroke; a Journal of Cerebral Circulation
https://www.readbyqxmd.com/read/28625687/can-surgeons-reduce-the-risk-for-dislocation-after-primary-total-hip-arthroplasty-performed-using-the-posterolateral-approach
#16
Kurt G Seagrave, Anders Troelsen, Bjørn G Madsen, Henrik Husted, Thomas Kallemose, Kirill Gromov
BACKGROUND: Hip dislocation is one of the most common postoperative complications after total hip arthroplasty (THA). Potential contributors include patient- and surgical-related factors. We performed a retrospective cohort study to identify risk factors for postoperative dislocation in patients receiving THA via the posterolateral approach. METHODS: We assessed 1326 consecutive primary THAs performed between 2010 and 2015. Patient information was documented, and plain radiographic films were used to evaluate cup positioning, hip offset, and hip length change...
May 4, 2017: Journal of Arthroplasty
https://www.readbyqxmd.com/read/28625502/a-computable-phenotype-improves-cohort-ascertainment-in-a-pediatric-pulmonary-hypertension-registry
#17
Alon Geva, Jessica L Gronsbell, Tianxi Cai, Tianrun Cai, Shawn N Murphy, Jessica C Lyons, Michelle M Heinz, Marc D Natter, Nandan Patibandla, Jonathan Bickel, Mary P Mullen, Kenneth D Mandl
OBJECTIVES: To compare registry and electronic health record (EHR) data mining approaches for cohort ascertainment in patients with pediatric pulmonary hypertension (PH) in an effort to overcome some of the limitations of registry enrollment alone in identifying patients with particular disease phenotypes. STUDY DESIGN: This study was a single-center retrospective analysis of EHR and registry data at Boston Children's Hospital. The local Informatics for Integrating Biology and the Bedside (i2b2) data warehouse was queried for billing codes, prescriptions, and narrative data related to pediatric PH...
June 15, 2017: Journal of Pediatrics
https://www.readbyqxmd.com/read/28625387/design-and-rationale-for-the-influenza-vaccination-after-myocardial-infarction-iami-trial-a-registry-based-randomized-clinical-trial
#18
Ole Fröbert, Matthias Götberg, Oskar Angerås, Lena Jonasson, David Erlinge, Thomas Engstrøm, Jonas Persson, Svend E Jensen, Elmir Omerovic, Stefan K James, Bo Lagerqvist, Johan Nilsson, Amra Kåregren, Rasmus Moer, Cao Yang, David B Agus, Andrejs Erglis, Lisette O Jensen, Lars Jakobsen, Evald H Christiansen, John Pernow
BACKGROUND: Registry studies and case-control studies have demonstrated that the risk of acute myocardial infarction (AMI) is increased following influenza infection. Small randomized trials, underpowered for clinical end points, indicate that future cardiovascular events can be reduced following influenza vaccination in patients with established cardiovascular disease. Influenza vaccination is recommended by international guidelines for patients with cardiovascular disease, but uptake is varying and vaccination is rarely prioritized during hospitalization for AMI...
July 2017: American Heart Journal
https://www.readbyqxmd.com/read/28625380/factors-associated-with-non-vitamin-k-antagonist-oral-anticoagulants-for-stroke-prevention-in-patients-with-new-onset-atrial-fibrillation-results-from-the-outcomes-registry-for-better-informed-treatment-of-atrial-fibrillation-ii-orbit-af-ii
#19
Benjamin A Steinberg, Peter Shrader, Laine Thomas, Jack Ansell, Gregg C Fonarow, Bernard J Gersh, Elaine Hylek, Peter R Kowey, Kenneth W Mahaffey, Emily C O'Brien, Daniel E Singer, Eric D Peterson, Jonathan P Piccini
BACKGROUND: Several non-vitamin K antagonist oral anticoagulant (NOAC) alternatives to warfarin are available for stroke prevention in atrial fibrillation (AF). We aimed to describe the factors associated with selection of NOACs versus warfarin in patients with new onset AF. METHODS: The ORBIT-AF II study is a national, US, prospective, observational, cohort study of anticoagulation treatment in patients with AF receiving NOACs or warfarin in the United States from 2013 to 2016...
July 2017: American Heart Journal
https://www.readbyqxmd.com/read/28625273/development-of-a-core-outcome-set-for-disease-modification-trials-in-mild-to-moderate-dementia-a-systematic-review-patient-and-public-consultation-and-consensus-recommendations
#20
Lucy Webster, Derek Groskreutz, Anna Grinbergs-Saull, Rob Howard, John T O'Brien, Gail Mountain, Sube Banerjee, Bob Woods, Robert Perneczky, Louise Lafortune, Charlotte Roberts, Jenny McCleery, James Pickett, Frances Bunn, David Challis, Georgina Charlesworth, Katie Featherstone, Chris Fox, Claire Goodman, Roy Jones, Sallie Lamb, Esme Moniz-Cook, Justine Schneider, Sasha Shepperd, Claire Surr, Jo Thompson-Coon, Clive Ballard, Carol Brayne, Orlaith Burke, Alistair Burns, Linda Clare, Peter Garrard, Patrick Kehoe, Peter Passmore, Clive Holmes, Ian Maidment, Fliss Murtagh, Louise Robinson, Gill Livingston
BACKGROUND: There is currently no disease-modifying treatment available to halt or delay the progression of the disease pathology in dementia. An agreed core set of the best-available and most appropriate outcomes for disease modification would facilitate the design of trials and ensure consistency across disease modification trials, as well as making results comparable and meta-analysable in future trials. OBJECTIVES: To agree a set of core outcomes for disease modification trials for mild to moderate dementia with the UK dementia research community and patient and public involvement (PPI)...
May 2017: Health Technology Assessment: HTA
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