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OP41 Facilitating Dialogue Of Real-World Evidence Use In Health Technology Assessment: Taxonomy Of Question/Data Source Pairings To Support A Registry Of Studies
- Ron L Akehurst, Linda A Murphy, Jorge Mestre-Ferrandiz, Oriol Solà-Morales, Gérard de Pouvourville, David Cunningham, Sorcha Corry, Matthew Franklin, Ann-Marie Chapman
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- Journal:
- International Journal of Technology Assessment in Health Care / Volume 38 / Issue S1 / December 2022
- Published online by Cambridge University Press:
- 23 December 2022, pp. S16-S17
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Introduction
This paper reports the results of the collaboration within the European initiative of new Reimbursement and aCCess Approaches (EUreccA) which is concerned with the use of real-world evidence (RWE) in health technology assessment (HTA) decision-making. The work grew from the observation of a large, very experienced group of HTA practitioners which found that the use of RWE varied depending on the type of question asked and the particulars of the data source(s) used. We set out to examine how RWE is used in HTA decision-making and to make proposals on its facilitation.
MethodsLiterature reviews covering earlier reviews of RWE use, academic papers, and HTA agency websites were combined with case studies involving interviews with decision-makers in four countries (England, France, Italy, Sweden) to identify the circumstances of breakdown of RWE use and to build a categorization of the uses of RWE and associated difficulties. This evidence supported the creation of a taxonomy of pairings of data sources and the questions they were used to address. The face validity of the approach was tested at an advisory board of senior HTA practitioners.
ResultsIn total, 27 questions were identified and 10 types of data source, giving 270 pairings. These pairings were linked to relevant methods guidance and to examples of their use, itemizing HTA issues and decisions made. Reports are being prepared for publication, covering the detail of the methods of the literature searches; methods of the country case studies; a description of the taxonomy; and guidance on governance.
ConclusionsWhen using RWE in HTA decision-making, the detail of the particular data sources and question addressed matter. Recently, both the International Society for Pharmacoeconomics and Outcomes Research (ISPOR) and the Real-World Transparency Initiative have argued for a registry of the uses of RWE. The work described here offers a starting classification of the material that should be held in such a registry, and which in itself could be developed by the stakeholders, both agencies and companies, that use it, furthering trust and confidence.
Neurocognitive SuperAging in Older Adults Living With HIV: Demographic, Neuromedical and Everyday Functioning Correlates
- Rowan Saloner, Laura M. Campbell, Vanessa Serrano, Jessica L. Montoya, Elizabeth Pasipanodya, Emily W. Paolillo, Donald Franklin, Ronald J. Ellis, Scott L. Letendre, Ann C. Collier, David B. Clifford, Benjamin B. Gelman, Christina M. Marra, J. Allen McCutchan, Susan Morgello, Ned Sacktor, Dilip V. Jeste, Igor Grant, Robert K. Heaton, David J. Moore, the CHARTER and HNRP Groups
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- Journal of the International Neuropsychological Society / Volume 25 / Issue 5 / May 2019
- Published online by Cambridge University Press:
- 20 March 2019, pp. 507-519
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Objectives: Studies of neurocognitively elite older adults, termed SuperAgers, have identified clinical predictors and neurobiological indicators of resilience against age-related neurocognitive decline. Despite rising rates of older persons living with HIV (PLWH), SuperAging (SA) in PLWH remains undefined. We aimed to establish neuropsychological criteria for SA in PLWH and examined clinically relevant correlates of SA. Methods: 734 PLWH and 123 HIV-uninfected participants between 50 and 64 years of age underwent neuropsychological and neuromedical evaluations. SA was defined as demographically corrected (i.e., sex, race/ethnicity, education) global neurocognitive performance within normal range for 25-year-olds. Remaining participants were labeled cognitively normal (CN) or impaired (CI) based on actual age. Chi-square and analysis of variance tests examined HIV group differences on neurocognitive status and demographics. Within PLWH, neurocognitive status differences were tested on HIV disease characteristics, medical comorbidities, and everyday functioning. Multinomial logistic regression explored independent predictors of neurocognitive status. Results: Neurocognitive status rates and demographic characteristics differed between PLWH (SA=17%; CN=38%; CI=45%) and HIV-uninfected participants (SA=35%; CN=55%; CI=11%). In PLWH, neurocognitive groups were comparable on demographic and HIV disease characteristics. Younger age, higher verbal IQ, absence of diabetes, fewer depressive symptoms, and lifetime cannabis use disorder increased likelihood of SA. SA reported increased independence in everyday functioning, employment, and health-related quality of life than non-SA. Conclusions: Despite combined neurological risk of aging and HIV, youthful neurocognitive performance is possible for older PLWH. SA relates to improved real-world functioning and may be better explained by cognitive reserve and maintenance of cardiometabolic and mental health than HIV disease severity. Future research investigating biomarker and lifestyle (e.g., physical activity) correlates of SA may help identify modifiable neuroprotective factors against HIV-related neurobiological aging. (JINS, 2019, 25, 507–519)
Validation of the Brief Developmental Assessment in pre-school children with heart disease
- Katherine L. Brown, Deborah A. Ridout, Christina Pagel, Monica Lakhanpaul, Suzan Kakat, Victoria Banks, Rodney Franklin, Thomas Witter, Rhian Lakhani, Shane Tibby, David Anderson, Victor Tsang, Aparna U. Hoskote, Jo Wray
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- Journal:
- Cardiology in the Young / Volume 28 / Issue 4 / April 2018
- Published online by Cambridge University Press:
- 07 March 2018, pp. 571-581
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Introduction
The objective of this study was to prospectively validate the “Brief Developmental Assessment”, which is a new early recognition tool for neurodevelopmental abnormalities in children with heart disease that was developed for use by cardiac teams.
MethodsThis was a prospective validation study among a representative sample of 960 pre-school children with heart disease from three United Kingdom tertiary cardiac centres who were analysed grouped into five separate age bands.
ResultsThe “Brief Developmental Assessment” was successfully validated in the older four age bands, but not in the youngest representing infants under the age of 4 months, as pre-set validation thresholds were met – lower 95% confidence limit for the correlation coefficient above 0.75 – in terms of agreement of scores between two raters and with an external measure the “Mullen Scales of Early Learning”. On the basis of American Association of Pediatrics Guidelines, which state that the sensitivity and specificity of a developmental screening tool should fall between 70 and 80%, “Brief Developmental Assessment” outcome of Red meets this threshold for detection of Mullen scores >2 standard deviations below the mean.
ConclusionThe “Brief Developmental Assessment” may be used to improve the quality of assessment of children with heart disease. This will require a training package for users and a guide to action for abnormal results. Further research is needed to determine how best to deploy the “Brief Developmental Assessment” at different time points in children with heart disease and to determine the management strategy in infants younger than 4 months old.
Executive dysfunction, brain aging, and political leadership
- Mark Fisher, David L. Franklin, Jerrold M. Post
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- Journal:
- Politics and the Life Sciences / Volume 33 / Issue 2 / Fall 2014
- Published online by Cambridge University Press:
- 18 January 2016, pp. 93-102
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Decision-making is an essential component of executive function, and a critical skill of political leadership. Neuroanatomic localization studies have established the prefrontal cortex as the critical brain site for executive function. In addition to the prefrontal cortex, white matter tracts as well as subcortical brain structures are crucial for optimal executive function. Executive function shows a significant decline beginning at age 60, and this is associated with age-related atrophy of prefrontal cortex, cerebral white matter disease, and cerebral microbleeds. Notably, age-related decline in executive function appears to be a relatively selective cognitive deterioration, generally sparing language and memory function. While an individual may appear to be functioning normally with regard to relatively obvious cognitive functions such as language and memory, that same individual may lack the capacity to integrate these cognitive functions to achieve normal decision-making. From a historical perspective, global decline in cognitive function of political leaders has been alternatively described as a catastrophic event, a slowly progressive deterioration, or a relatively episodic phenomenon. Selective loss of executive function in political leaders is less appreciated, but increased utilization of highly sensitive brain imaging techniques will likely bring greater appreciation to this phenomenon. Former Israeli Prime Minister Ariel Sharon was an example of a political leader with a well-described neurodegenerative condition (cerebral amyloid angiopathy) that creates a neuropathological substrate for executive dysfunction. Based on the known neuroanatomical and neuropathological changes that occur with aging, we should probably assume that a significant proportion of political leaders over the age of 65 have impairment of executive function.
Unexpected deaths and unplanned re-admissions in infants discharged home after cardiac surgery: a systematic review of potential risk factors
- Jenifer Tregay, Jo Wray, Catherine Bull, Rodney C. Franklin, Piers Daubeney, David J. Barron, Katherine Brown, Rachel L. Knowles
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- Cardiology in the Young / Volume 25 / Issue 5 / June 2015
- Published online by Cambridge University Press:
- 30 December 2014, pp. 839-852
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Background
Babies with CHDs are a particularly vulnerable population with significant mortality in their 1st year. Although most deaths occur in the hospital within the early postoperative period, around one-fifth of postoperative deaths in the 1st year of life may occur after hospital discharge in infants who have undergone apparently successful cardiac surgery.
AimTo systematically review the published literature and identify risk factors for adverse outcomes, specifically deaths and unplanned re-admissions, following hospital discharge after infant surgery for life-threatening CHDs.
MethodsA systematic search was conducted in MEDLINE, EMBASE, CINAHL, Cochrane Library, Web of Knowledge, and PsycINFO electronic databases, supplemented by manual searching of conference abstracts.
ResultsA total of 15 studies were eligible for inclusion. Almost exclusively, studies were conducted in single US centres and focussed on children with complex single ventricle diagnoses. A wide range of risk factors were evaluated, and those more frequently identified as having a significant association with higher mortality or unplanned re-admission risk were non-Caucasian ethnicity, lower socio-economic status, co-morbid conditions, age at surgery, operative complexity and procedure type, and post-operative feeding difficulties.
ConclusionsStudies investigating risk factors for adverse outcomes post-discharge following diverse congenital heart operations in infants are lacking. Further research is needed to systematically identify higher risk groups, and to develop interventions targeted at supporting the most vulnerable infants within an integrated primary and secondary care pathway.
Integrating Neurobiology and Psychopathology into Evidence-Based Treatment of Social Anxiety Disorder
- Michael R. Liebowitz, Philip T. Ninan, Franklin R. Schneier, Carlos Blanco, David L. Ginsberg, Eric Hollander
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- CNS Spectrums / Volume 10 / Issue S13 / September 2005
- Published online by Cambridge University Press:
- 07 November 2014, pp. 1-2
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Social anxiety disorder (SAD) is a common, chronic psychiatric disorder characterized by a persistent fear of social or performance situations in which embarrassment can occur. This disorder typically appears during the mid-adolescent years and is unremitting throughout life if not properly treated. SAD presents as two subtypes: the more common and debilitating generalized form, and the nongeneralized form, which consists predominantly of performance anxiety. The majority of patients with SAD have comorbid mental disorders, including mood, anxiety, and substance abuse. No single development theory has been proposed to account for the origins of SAD, although current understanding of the etiology of SAD posits an interaction between psychological and biological factors. Risk factors include environmental and parenting influences and dysfunctional cognitive and conditioning events in early childhood. The neurobiology of SAD appears to involve neurochemical dysfunction, as evidenced by studies of neuroreceptor imaging, neuroendocrine function, and profiles of response to specific medications. Clinical trials have demonstrated that benzodiazepines and antidepressants are effective in the treatment of SAD. The selective serotonin reuptake inhibitors are emerging as the first-line treatment for SAD, based on their proven safety, tolerability, and efficacy. Goals for ongoing future research include development of approaches to achieve remission, to convert nonresponders and partial responders to full responders, and to prevent relapse and maintain long-term efficacy.
This monograph explores the epidemiology, clinical presentation, and differential diagnosis of SAD, with a focus on neural circuitry of social relationships and neurochemical dysfunction. The prevalence, rates of recognition and treatment, patterns of comorbidity, quality-of-life issues, and natural history of SAD are discussed as well as pharmacologic and psychosocial treatment strategies for SAD.
Integrating Neurobiology and Psychopathology into Evidence-Based Treatment of Social Anxiety Disorder
- Michael R. Liebowitz, David L. Ginsberg, Philip T. Ninan, Franklin R. Schneier, Carlos Blanco
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- CNS Spectrums / Volume 10 / Issue 10 / October 2005
- Published online by Cambridge University Press:
- 07 November 2014, pp. 805a-805b
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Social anxiety disorder (SAD) is a common, chronic psychiatric disorder characterized by a persistent fear of social or performance situations in which embarrassment can occur. This disorder typically appears during the mid-adolescent years and is unremitting throughout life if not properly treated. SAD presents as two subtypes: the more common and debilitating generalized form, and the nongeneralized form, which consists predominantly of performance anxiety. The majority of patients with SAD have comorbid mental disorders, including mood, anxiety, and substance abuse. No single development theory has been proposed to account for the origins of SAD, although current understanding of the etiology of SAD posits an interaction between psychological and biological factors. Risk factors include environmental and parenting influences and dysfunctional cognitive and conditioning events in early childhood. The neurobiology of SAD appears to involve neurochemical dysfunction, as evidenced by studies of neuroreceptor imaging, neuroendocrine function, and profiles of response to specific medications. Clinical trials have demonstrated that benzodiazepines and antidepressants are effective in the treatment of SAD. The selective serotonin reuptake inhibitors are emerging as the first-line treatment for SAD, based on their proven safety, tolerability, and efficacy. Goals for ongoing future research include development of approaches to achieve remission, to convert nonresponders and partial responders to full responders, and to prevent relapse and maintain long-term efficacy.
This monograph explores the epidemiology, clinical presentation, and differential diagnosis of SAD, with a focus on neural circuitry of social relationships and neurochemical dysfunction. The prevalence, rates of recognition and treatment, patterns of comorbidity, quality-of-life issues, and natural history of SAD are discussed as well as pharmacologic and psychosocial treatment strategies for SAD.
Quantitative Electrochemical Measurements Using In Situ ec-S/TEM Devices
- Raymond R. Unocic, Robert L. Sacci, Gilbert M. Brown, Gabriel M. Veith, Nancy J. Dudney, Karren L. More, Franklin S. Walden II, Daniel S. Gardiner, John Damiano, David P. Nackashi
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- Journal:
- Microscopy and Microanalysis / Volume 20 / Issue 2 / April 2014
- Published online by Cambridge University Press:
- 11 March 2014, pp. 452-461
- Print publication:
- April 2014
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Insight into dynamic electrochemical processes can be obtained with in situ electrochemical-scanning/transmission electron microscopy (ec-S/TEM), a technique that utilizes microfluidic electrochemical cells to characterize electrochemical processes with S/TEM imaging, diffraction, or spectroscopy. The microfluidic electrochemical cell is composed of microfabricated devices with glassy carbon and platinum microband electrodes in a three-electrode cell configuration. To establish the validity of this method for quantitative in situ electrochemistry research, cyclic voltammetry (CV), choronoamperometry (CA), and electrochemical impedance spectroscopy (EIS) were performed using a standard one electron transfer redox couple [Fe(CN)6]3−/4−-based electrolyte. Established relationships of the electrode geometry and microfluidic conditions were fitted with CV and chronoamperometic measurements of analyte diffusion coefficients and were found to agree with well-accepted values that are on the order of 10−5 cm2/s. Influence of the electron beam on electrochemical measurements was found to be negligible during CV scans where the current profile varied only within a few nA with the electron beam on and off, which is well within the hysteresis between multiple CV scans. The combination of experimental results provides a validation that quantitative electrochemistry experiments can be performed with these small-scale microfluidic electrochemical cells provided that accurate geometrical electrode configurations, diffusion boundary layers, and microfluidic conditions are accounted for.
Excess Mortality in the Aftermath of Hurricane Katrina: A Preliminary Report
- Kevin U. Stephens, Sr, David Grew, Karen Chin, Paul Kadetz, P Gregg Greenough, Frederick M. Burkle, Jr, Sandra L. Robinson, Evangeline R. Franklin
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- Journal:
- Disaster Medicine and Public Health Preparedness / Volume 1 / Issue 1 / July 2007
- Published online by Cambridge University Press:
- 08 April 2013, pp. 15-20
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Background: Reports that death notices in the Times-Picayune, the New Orleans daily newspaper, increased dramatically in 2006 prompted local health officials to determine whether death notice surveillance could serve as a valid alternative means to confirm suspicions of excess mortality requiring immediate preventive actions and intervention.
Methods: Monthly totals of death notices from the Times-Picayune were used to obtain frequency and proportion of deaths from January to June 2006. To validate this methodology the authors compared 2002 to 2003 monthly death frequency and proportions between death notices and top 10 causes of death from state vital statistics.
Results: A significant (47%) increase in proportion of deaths was seen compared with the known baseline population. From January to June 2006, there were on average 1317 deaths notices per month for a mortality rate of 91.37 deaths per 100,000 population, compared with a 2002–2004 average of 924 deaths per month for a mortality rate of 62.17 deaths per 100,000 population. Differences between 2002 and 2003 death notices and top 10 causes of death were insignificant and had high correlation.
Discussion: Death notices from local daily newspaper sources may serve as an alternative source of mortality information. Problems with delayed reporting, timely analysis, and interoperability between state and local health departments may be solved by the implementation of electronic death registration. (Disaster Med Public Health Preparedness. 2007;1:15–20)
Contributors
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- By Alaine Auger, Kathleen Brager, Christopher M. Buddle, Jaret Daniels, Thomas A. Delamere, Adam Dodd, Crystal M. Ernst, Brian D. Farrell, Adrian Franklin, Donna J. Giberson, C. Michael Hall, Yupa Hanboonsong, Glen T. Hvenegaard, Kelsey Johansen, Akito Y. Kawahara, Raynald Harvey Lemelin, Jeff Lockwood, Forrest L. Mitchell, Tim R. New, David L. Pearson, Robert M. Pyle, Jessica J. Rykken, Michael J. Samways, Matt Shardlow, Edward M. Spevak, Arnold van Huis, Ko Veltman, Kristen M. Vinke, Alan L. Yen
- Edited by Raynald Harvey Lemelin, Lakehead University, Ontario
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- The Management of Insects in Recreation and Tourism
- Published online:
- 05 December 2012
- Print publication:
- 22 November 2012, pp x-xiv
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Use of diagnostic information submitted to the United Kingdom Central Cardiac Audit Database: development of categorisation and allocation algorithms
- Kate L. Brown, Sonya Crowe, Christina Pagel, Catherine Bull, Nagarajan Muthialu, John Gibbs, David Cunningham, Martin Utley, Victor T. Tsang, Rodney Franklin
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- Journal:
- Cardiology in the Young / Volume 23 / Issue 4 / August 2013
- Published online by Cambridge University Press:
- 02 October 2012, pp. 491-498
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Objective
To categorise records according to primary cardiac diagnosis in the United Kingdom Central Cardiac Audit Database in order to add this information to a risk adjustment model for paediatric cardiac surgery.
DesignCodes from the International Paediatric Congenital Cardiac Code were mapped to recognisable primary cardiac diagnosis groupings, allocated using a hierarchy and less refined diagnosis groups, based on the number of functional ventricles and presence of aortic obstruction.
SettingA National Clinical Audit Database.
PatientsChildren undergoing cardiac interventions: the proportions for each diagnosis scheme are presented for 13,551 first patient surgical episodes since 2004.
ResultsIn Scheme 1, the most prevalent diagnoses nationally were ventricular septal defect (13%), patent ductus arteriosus (10.4%), and tetralogy of Fallot (9.5%). In Scheme 2, the prevalence of a biventricular heart without aortic obstruction was 64.2% and with aortic obstruction was 14.1%; the prevalence of a functionally univentricular heart without aortic obstruction was 4.3% and with aortic obstruction was 4.7%; the prevalence of unknown (ambiguous) number of ventricles was 8.4%; and the prevalence of acquired heart disease only was 2.2%. Diagnostic groups added to procedural information: of the 17% of all operations classed as “not a specific procedure”, 97.1% had a diagnosis identified in Scheme 1 and 97.2% in Scheme 2.
ConclusionsDiagnostic information adds to surgical procedural data when the complexity of case mix is analysed in a national database. These diagnostic categorisation schemes may be used for future investigation of the frequency of conditions and evaluation of long-term outcome over a series of procedures.
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- By Luis G. Acevedo, Schahram Akbarian, Ioanna Andreou, Krishnarao Appasani, Raghu K. Appasani, Julia Arand, David M. Ashley, Alexander R. Ball, Yehudit Bergman, Marina Bibikova, Angela Bithell, Francesca Bonafè, Eric E. Bouhassira, Victoria L. Boyd, Noel J. Buckley, Lars Olov Bygren, Claudio M. Caldarera, Gemma Carvill, James W. F. Catto, Sarah Derks, Ewa Dudziec, Jeffrey D. Falk, Jian-Bing Fan, Joseph M. Fernandez, David E. Fisher, Emanuela Fiumana, Tamara B. Franklin, Fei Gao, Arkadiusz Gertych, Emanuele Giordano, David Goldman, Markus Grammel, Carlo Guarnieri, Kevin L. Gunderson, Victoria (Fatemeh) G. Haghighi, Xu Han, Yong-Mahn Han, Howard C. Hang, Aditi Hazra, Laura B.K. Herzing, Norbert Hochstein, Robin Holliday, Dorothee Honsel, Mary A. Jelinek, Guanyu Ji, Yan Jiang, Atsushi Kaneda, Richard A. Katz, Hyemin Kim, Richard Kroon, Tapas K. Kundu, Benoit Labonté, Daeyoup Lee, Konstantin Lepikhov, Andrea Linnemann-Florl, Dirk Loeffert, Dylan Maixner, Isabelle M. Mansuy, Andreas Missel, D. V. Mohankrishna, Joana Carvalho Moreira de Mello, Paolo G. Morselli, Rituparna Mukhopadhyay, Claudio Muscari, Takashi Nagano, Frank Narz, Shuji Ogino, Carlo M. Oranges, Shari Orlanski, Alice Pasini, Ralf Peist, Lygia V. Pereira, Andrey Poleshko, Claire Rougeulle, Thea Rütjes, Ana Sanz, Benjamin G. Schroeder, Gerald Schock, Kornel Schuebel, B. Ruthrotha Selvi, Hogyu Seo, Natalia Shalginskikh, Andrew Sharp, Jun S. Song, Lennart Suckau, Azim Surani, Jian Tajbakhsh, Gustavo Turecki, Céline Vallot, Manon van Engeland, Jörn Walter, Nicholas C. Wong, Mark Wossidlo, Honglong Wu, Yurong Xin, Zhixiang Yan, Yu-Ying Yang, Mingzhi Ye, Kyoko Yokomori, Sephorah Zaman, Weihua Zeng, Gerald Zon
- Edited by Krishnarao Appasani
- Foreword by Azim Surani, University of Cambridge
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- Book:
- Epigenomics
- Published online:
- 05 August 2012
- Print publication:
- 02 August 2012, pp x-xxiv
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- By Christer Allgulander, David S. Baldwin, Neeltje M. Batelaan, Hany Bissada, Carlos Blanco, Laura B. Bragdon, Angus Brown, Martin Brown, Darren Cotterell, John M. Davis, Jamie M. Dupuy, Naomi A. Fineberg, Martine F. Flament, John R. Geddes, Stephan Heres, Jeffrey Huffman, Jonathan C. Ipser, Werner Kissling, Christopher J. Kratochvil, Stefan Leucht, Michael R. Liebowitz, John S. March, Andrew A. Nierenberg, Michael J. Ostacher, Ilenia Pampaloni, Roy H. Perlis, Luis H. Ripoll, Franklin R. Schneier, Larry J. Siever, Wendy Spettigue, Dan J. Stein, Matthew J. Taylor, Joseph Triebwasser, Anton J. L. M. Van Balkom, Wim van den Brink, Brigette S. Vaughan, Sarah Waldman
- Edited by Dan Stein, University of Cape Town, Bernard Lerer, Stephen M. Stahl, University of California, San Diego
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- Essential Evidence-Based Psychopharmacology
- Published online:
- 05 August 2012
- Print publication:
- 05 July 2012, pp vi-vii
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- By Mohamed Aboulghar, Ahmed Abou-Setta, Mary E. Abusief, G. David Adamson, R. J. Aitken, Hesham Al-Inany, Baris Ata, Hamdy Azab, Adam Balen, David H. Barad, Pedro N. Barri, C. Blockeel, Giuseppe Botta, Mark Bowman, Chris Brewer, Dominique M. Butawan, Sandra A. Carson, Hai Ying Chen, Anne Clark, Buenaventura Coroleu, S. Das, C. Dechanet, H. Déchaud, Cora de Klerk, Sheryl de Lacey, S. Deutsch-Bringer, P. Devroey, Didier Dewailly, Hakan E. Duran, Walid El Sherbiny, Tarek El-Toukhy, Johannes L. H. Evers, Cynthia Farquhar, Rodney D. Franklin, Juan A. Garcia-Velasco, David K. Gardner, Norbert Gleicher, Gedis Grudzinskas, Roger Hart, B Hédon, Colin M. Howles, Jack Yu Jen Huang, N. P. Johnson, Hey-Joo Kang, Gab Kovacs, Ben Kroon, Anver Kuliev, William H. Kutteh, Nick Macklon, Ragaa Mansour, Lamiya Mohiyiddeen, Lisa J. Moran, David Mortimer, Sharon T. Mortimer, Luciano G. Nardo, Robert J. Norman, Willem Ombelet, Luk Rombauts, Zev Rosenwaks, Francisco J. Ruiz Flores, Anthony J. Rutherford, Gavin Sacks, Denny Sakkas, M. W. Seif, Ayse Seyhan, Caroline Smith, Kate Stern, Elizabeth A. Sullivan, Sesh Kamal Sunkara, Seang Lin Tan, Mohamed Taranissi, Kelton P. Tremellen, Wendy S. Vitek, V. Vloeberghs, Bradley J. Van Voorhis, S. F. van Voorst, Amr Wahba, Yueping A. Wang, Klaus E. Wiemer
- Edited by Gab Kovacs, Monash University, Victoria
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- How to Improve your ART Success Rates
- Published online:
- 05 July 2011
- Print publication:
- 30 June 2011, pp viii-xii
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- By Rose Teteki Abbey, K. C. Abraham, David Tuesday Adamo, LeRoy H. Aden, Efrain Agosto, Victor Aguilan, Gillian T. W. Ahlgren, Charanjit Kaur AjitSingh, Dorothy B E A Akoto, Giuseppe Alberigo, Daniel E. Albrecht, Ruth Albrecht, Daniel O. Aleshire, Urs Altermatt, Anand Amaladass, Michael Amaladoss, James N. Amanze, Lesley G. Anderson, Thomas C. Anderson, Victor Anderson, Hope S. Antone, María Pilar Aquino, Paula Arai, Victorio Araya Guillén, S. Wesley Ariarajah, Ellen T. Armour, Brett Gregory Armstrong, Atsuhiro Asano, Naim Stifan Ateek, Mahmoud Ayoub, John Alembillah Azumah, Mercedes L. García Bachmann, Irena Backus, J. Wayne Baker, Mieke Bal, Lewis V. Baldwin, William Barbieri, António Barbosa da Silva, David Basinger, Bolaji Olukemi Bateye, Oswald Bayer, Daniel H. Bays, Rosalie Beck, Nancy Elizabeth Bedford, Guy-Thomas Bedouelle, Chorbishop Seely Beggiani, Wolfgang Behringer, Christopher M. Bellitto, Byard Bennett, Harold V. Bennett, Teresa Berger, Miguel A. Bernad, Henley Bernard, Alan E. Bernstein, Jon L. Berquist, Johannes Beutler, Ana María Bidegain, Matthew P. Binkewicz, Jennifer Bird, Joseph Blenkinsopp, Dmytro Bondarenko, Paulo Bonfatti, Riet en Pim Bons-Storm, Jessica A. Boon, Marcus J. Borg, Mark Bosco, Peter C. Bouteneff, François Bovon, William D. Bowman, Paul S. Boyer, David Brakke, Richard E. Brantley, Marcus Braybrooke, Ian Breward, Ênio José da Costa Brito, Jewel Spears Brooker, Johannes Brosseder, Nicholas Canfield Read Brown, Robert F. Brown, Pamela K. Brubaker, Walter Brueggemann, Bishop Colin O. Buchanan, Stanley M. Burgess, Amy Nelson Burnett, J. Patout Burns, David B. Burrell, David Buttrick, James P. Byrd, Lavinia Byrne, Gerado Caetano, Marcos Caldas, Alkiviadis Calivas, William J. Callahan, Salvatore Calomino, Euan K. Cameron, William S. Campbell, Marcelo Ayres Camurça, Daniel F. Caner, Paul E. Capetz, Carlos F. Cardoza-Orlandi, Patrick W. Carey, Barbara Carvill, Hal Cauthron, Subhadra Mitra Channa, Mark D. Chapman, James H. Charlesworth, Kenneth R. Chase, Chen Zemin, Luciano Chianeque, Philip Chia Phin Yin, Francisca H. Chimhanda, Daniel Chiquete, John T. Chirban, Soobin Choi, Robert Choquette, Mita Choudhury, Gerald Christianson, John Chryssavgis, Sejong Chun, Esther Chung-Kim, Charles M. A. Clark, Elizabeth A. Clark, Sathianathan Clarke, Fred Cloud, John B. Cobb, W. Owen Cole, John A Coleman, John J. Collins, Sylvia Collins-Mayo, Paul K. Conkin, Beth A. Conklin, Sean Connolly, Demetrios J. Constantelos, Michael A. Conway, Paula M. Cooey, Austin Cooper, Michael L. Cooper-White, Pamela Cooper-White, L. William Countryman, Sérgio Coutinho, Pamela Couture, Shannon Craigo-Snell, James L. Crenshaw, David Crowner, Humberto Horacio Cucchetti, Lawrence S. Cunningham, Elizabeth Mason Currier, Emmanuel Cutrone, Mary L. Daniel, David D. Daniels, Robert Darden, Rolf Darge, Isaiah Dau, Jeffry C. Davis, Jane Dawson, Valentin Dedji, John W. de Gruchy, Paul DeHart, Wendy J. Deichmann Edwards, Miguel A. De La Torre, George E. Demacopoulos, Thomas de Mayo, Leah DeVun, Beatriz de Vasconcellos Dias, Dennis C. Dickerson, John M. Dillon, Luis Miguel Donatello, Igor Dorfmann-Lazarev, Susanna Drake, Jonathan A. Draper, N. Dreher Martin, Otto Dreydoppel, Angelyn Dries, A. J. Droge, Francis X. D'Sa, Marilyn Dunn, Nicole Wilkinson Duran, Rifaat Ebied, Mark J. Edwards, William H. Edwards, Leonard H. Ehrlich, Nancy L. Eiesland, Martin Elbel, J. Harold Ellens, Stephen Ellingson, Marvin M. Ellison, Robert Ellsberg, Jean Bethke Elshtain, Eldon Jay Epp, Peter C. Erb, Tassilo Erhardt, Maria Erling, Noel Leo Erskine, Gillian R. Evans, Virginia Fabella, Michael A. Fahey, Edward Farley, Margaret A. Farley, Wendy Farley, Robert Fastiggi, Seena Fazel, Duncan S. Ferguson, Helwar Figueroa, Paul Corby Finney, Kyriaki Karidoyanes FitzGerald, Thomas E. FitzGerald, John R. Fitzmier, Marie Therese Flanagan, Sabina Flanagan, Claude Flipo, Ronald B. Flowers, Carole Fontaine, David Ford, Mary Ford, Stephanie A. Ford, Jim Forest, William Franke, Robert M. Franklin, Ruth Franzén, Edward H. Friedman, Samuel Frouisou, Lorelei F. Fuchs, Jojo M. Fung, Inger Furseth, Richard R. Gaillardetz, Brandon Gallaher, China Galland, Mark Galli, Ismael García, Tharscisse Gatwa, Jean-Marie Gaudeul, Luis María Gavilanes del Castillo, Pavel L. Gavrilyuk, Volney P. Gay, Metropolitan Athanasios Geevargis, Kondothra M. George, Mary Gerhart, Simon Gikandi, Maurice Gilbert, Michael J. Gillgannon, Verónica Giménez Beliveau, Terryl Givens, Beth Glazier-McDonald, Philip Gleason, Menghun Goh, Brian Golding, Bishop Hilario M. Gomez, Michelle A. Gonzalez, Donald K. Gorrell, Roy Gottfried, Tamara Grdzelidze, Joel B. Green, Niels Henrik Gregersen, Cristina Grenholm, Herbert Griffiths, Eric W. Gritsch, Erich S. Gruen, Christoffer H. Grundmann, Paul H. Gundani, Jon P. Gunnemann, Petre Guran, Vidar L. Haanes, Jeremiah M. Hackett, Getatchew Haile, Douglas John Hall, Nicholas Hammond, Daphne Hampson, Jehu J. Hanciles, Barry Hankins, Jennifer Haraguchi, Stanley S. Harakas, Anthony John Harding, Conrad L. Harkins, J. William Harmless, Marjory Harper, Amir Harrak, Joel F. Harrington, Mark W. Harris, Susan Ashbrook Harvey, Van A. Harvey, R. Chris Hassel, Jione Havea, Daniel Hawk, Diana L. Hayes, Leslie Hayes, Priscilla Hayner, S. Mark Heim, Simo Heininen, Richard P. Heitzenrater, Eila Helander, David Hempton, Scott H. Hendrix, Jan-Olav Henriksen, Gina Hens-Piazza, Carter Heyward, Nicholas J. Higham, David Hilliard, Norman A. Hjelm, Peter C. Hodgson, Arthur Holder, M. Jan Holton, Dwight N. Hopkins, Ronnie Po-chia Hsia, Po-Ho Huang, James Hudnut-Beumler, Jennifer S. Hughes, Leonard M. Hummel, Mary E. Hunt, Laennec Hurbon, Mark Hutchinson, Susan E. Hylen, Mary Beth Ingham, H. Larry Ingle, Dale T. Irvin, Jon Isaak, Paul John Isaak, Ada María Isasi-Díaz, Hans Raun Iversen, Margaret C. Jacob, Arthur James, Maria Jansdotter-Samuelsson, David Jasper, Werner G. Jeanrond, Renée Jeffery, David Lyle Jeffrey, Theodore W. Jennings, David H. Jensen, Robin Margaret Jensen, David Jobling, Dale A. Johnson, Elizabeth A. Johnson, Maxwell E. Johnson, Sarah Johnson, Mark D. Johnston, F. Stanley Jones, James William Jones, John R. Jones, Alissa Jones Nelson, Inge Jonsson, Jan Joosten, Elizabeth Judd, Mulambya Peggy Kabonde, Robert Kaggwa, Sylvester Kahakwa, Isaac Kalimi, Ogbu U. Kalu, Eunice Kamaara, Wayne C. Kannaday, Musimbi Kanyoro, Veli-Matti Kärkkäinen, Frank Kaufmann, Léon Nguapitshi Kayongo, Richard Kearney, Alice A. Keefe, Ralph Keen, Catherine Keller, Anthony J. Kelly, Karen Kennelly, Kathi Lynn Kern, Fergus Kerr, Edward Kessler, George Kilcourse, Heup Young Kim, Kim Sung-Hae, Kim Yong-Bock, Kim Yung Suk, Richard King, Thomas M. King, Robert M. Kingdon, Ross Kinsler, Hans G. Kippenberg, Cheryl A. Kirk-Duggan, Clifton Kirkpatrick, Leonid Kishkovsky, Nadieszda Kizenko, Jeffrey Klaiber, Hans-Josef Klauck, Sidney Knight, Samuel Kobia, Robert Kolb, Karla Ann Koll, Heikki Kotila, Donald Kraybill, Philip D. W. Krey, Yves Krumenacker, Jeffrey Kah-Jin Kuan, Simanga R. Kumalo, Peter Kuzmic, Simon Shui-Man Kwan, Kwok Pui-lan, André LaCocque, Stephen E. Lahey, John Tsz Pang Lai, Emiel Lamberts, Armando Lampe, Craig Lampe, Beverly J. Lanzetta, Eve LaPlante, Lizette Larson-Miller, Ariel Bybee Laughton, Leonard Lawlor, Bentley Layton, Robin A. Leaver, Karen Lebacqz, Archie Chi Chung Lee, Marilyn J. Legge, Hervé LeGrand, D. L. LeMahieu, Raymond Lemieux, Bill J. Leonard, Ellen M. Leonard, Outi Leppä, Jean Lesaulnier, Nantawan Boonprasat Lewis, Henrietta Leyser, Alexei Lidov, Bernard Lightman, Paul Chang-Ha Lim, Carter Lindberg, Mark R. Lindsay, James R. Linville, James C. Livingston, Ann Loades, David Loades, Jean-Claude Loba-Mkole, Lo Lung Kwong, Wati Longchar, Eleazar López, David W. Lotz, Andrew Louth, Robin W. Lovin, William Luis, Frank D. Macchia, Diarmaid N. J. MacCulloch, Kirk R. MacGregor, Marjory A. MacLean, Donald MacLeod, Tomas S. Maddela, Inge Mager, Laurenti Magesa, David G. Maillu, Fortunato Mallimaci, Philip Mamalakis, Kä Mana, Ukachukwu Chris Manus, Herbert Robinson Marbury, Reuel Norman Marigza, Jacqueline Mariña, Antti Marjanen, Luiz C. L. Marques, Madipoane Masenya (ngwan'a Mphahlele), Caleb J. D. Maskell, Steve Mason, Thomas Massaro, Fernando Matamoros Ponce, András Máté-Tóth, Odair Pedroso Mateus, Dinis Matsolo, Fumitaka Matsuoka, John D'Arcy May, Yelena Mazour-Matusevich, Theodore Mbazumutima, John S. McClure, Christian McConnell, Lee Martin McDonald, Gary B. McGee, Thomas McGowan, Alister E. McGrath, Richard J. McGregor, John A. McGuckin, Maud Burnett McInerney, Elsie Anne McKee, Mary B. McKinley, James F. McMillan, Ernan McMullin, Kathleen E. McVey, M. 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Nicholson, George W. E. Nickelsburg, Tatyana Nikolskaya, Damayanthi M. A. Niles, Bertil Nilsson, Nyambura Njoroge, Fidelis Nkomazana, Mary Beth Norton, Christian Nottmeier, Sonene Nyawo, Anthère Nzabatsinda, Edward T. Oakes, Gerald O'Collins, Daniel O'Connell, David W. Odell-Scott, Mercy Amba Oduyoye, Kathleen O'Grady, Oyeronke Olajubu, Thomas O'Loughlin, Dennis T. Olson, J. Steven O'Malley, Cephas N. Omenyo, Muriel Orevillo-Montenegro, César Augusto Ornellas Ramos, Agbonkhianmeghe E. Orobator, Kenan B. Osborne, Carolyn Osiek, Javier Otaola Montagne, Douglas F. Ottati, Anna May Say Pa, Irina Paert, Jerry G. Pankhurst, Aristotle Papanikolaou, Samuele F. Pardini, Stefano Parenti, Peter Paris, Sung Bae Park, Cristián G. Parker, Raquel Pastor, Joseph Pathrapankal, Daniel Patte, W. Brown Patterson, Clive Pearson, Keith F. Pecklers, Nancy Cardoso Pereira, David Horace Perkins, Pheme Perkins, Edward N. Peters, Rebecca Todd Peters, Bishop Yeznik Petrossian, Raymond Pfister, Peter C. Phan, Isabel Apawo Phiri, William S. F. Pickering, Derrick G. Pitard, William Elvis Plata, Zlatko Plese, John Plummer, James Newton Poling, Ronald Popivchak, Andrew Porter, Ute Possekel, James M. Powell, Enos Das Pradhan, Devadasan Premnath, Jaime Adrían Prieto Valladares, Anne Primavesi, Randall Prior, María Alicia Puente Lutteroth, Eduardo Guzmão Quadros, Albert Rabil, Laurent William Ramambason, Apolonio M. Ranche, Vololona Randriamanantena Andriamitandrina, Lawrence R. Rast, Paul L. Redditt, Adele Reinhartz, Rolf Rendtorff, Pål Repstad, James N. Rhodes, John K. Riches, Joerg Rieger, Sharon H. Ringe, Sandra Rios, Tyler Roberts, David M. Robinson, James M. Robinson, Joanne Maguire Robinson, Richard A. H. Robinson, Roy R. Robson, Jack B. Rogers, Maria Roginska, Sidney Rooy, Rev. Garnett Roper, Maria José Fontelas Rosado-Nunes, Andrew C. Ross, Stefan Rossbach, François Rossier, John D. Roth, John K. Roth, Phillip Rothwell, Richard E. Rubenstein, Rosemary Radford Ruether, Markku Ruotsila, John E. Rybolt, Risto Saarinen, John Saillant, Juan Sanchez, Wagner Lopes Sanchez, Hugo N. Santos, Gerhard Sauter, Gloria L. Schaab, Sandra M. Schneiders, Quentin J. Schultze, Fernando F. Segovia, Turid Karlsen Seim, Carsten Selch Jensen, Alan P. F. Sell, Frank C. Senn, Kent Davis Sensenig, Damían Setton, Bal Krishna Sharma, Carolyn J. Sharp, Thomas Sheehan, N. Gerald Shenk, Christian Sheppard, Charles Sherlock, Tabona Shoko, Walter B. Shurden, Marguerite Shuster, B. Mark Sietsema, Batara Sihombing, Neil Silberman, Clodomiro Siller, Samuel Silva-Gotay, Heikki Silvet, John K. Simmons, Hagith Sivan, James C. Skedros, Abraham Smith, Ashley A. Smith, Ted A. Smith, Daud Soesilo, Pia Søltoft, Choan-Seng (C. S.) Song, Kathryn Spink, Bryan Spinks, Eric O. Springsted, Nicolas Standaert, Brian Stanley, Glen H. Stassen, Karel Steenbrink, Stephen J. Stein, Andrea Sterk, Gregory E. Sterling, Columba Stewart, Jacques Stewart, Robert B. Stewart, Cynthia Stokes Brown, Ken Stone, Anne Stott, Elizabeth Stuart, Monya Stubbs, Marjorie Hewitt Suchocki, David Kwang-sun Suh, Scott W. Sunquist, Keith Suter, Douglas Sweeney, Charles H. Talbert, Shawqi N. Talia, Elsa Tamez, Joseph B. Tamney, Jonathan Y. Tan, Yak-Hwee Tan, Kathryn Tanner, Feiya Tao, Elizabeth S. Tapia, Aquiline Tarimo, Claire Taylor, Mark Lewis Taylor, Bishop Abba Samuel Wolde Tekestebirhan, Eugene TeSelle, M. Thomas Thangaraj, David R. Thomas, Andrew Thornley, Scott Thumma, Marcelo Timotheo da Costa, George E. “Tink” Tinker, Ola Tjørhom, Karen Jo Torjesen, Iain R. Torrance, Fernando Torres-Londoño, Archbishop Demetrios [Trakatellis], Marit Trelstad, Christine Trevett, Phyllis Trible, Johannes Tromp, Paul Turner, Robert G. Tuttle, Archbishop Desmond Tutu, Peter Tyler, Anders Tyrberg, Justin Ukpong, Javier Ulloa, Camillus Umoh, Kristi Upson-Saia, Martina Urban, Monica Uribe, Elochukwu Eugene Uzukwu, Richard Vaggione, Gabriel Vahanian, Paul Valliere, T. J. Van Bavel, Steven Vanderputten, Peter Van der Veer, Huub Van de Sandt, Louis Van Tongeren, Luke A. Veronis, Noel Villalba, Ramón Vinke, Tim Vivian, David Voas, Elena Volkova, Katharina von Kellenbach, Elina Vuola, Timothy Wadkins, Elaine M. Wainwright, Randi Jones Walker, Dewey D. Wallace, Jerry Walls, Michael J. Walsh, Philip Walters, Janet Walton, Jonathan L. Walton, Wang Xiaochao, Patricia A. Ward, David Harrington Watt, Herold D. Weiss, Laurence L. Welborn, Sharon D. Welch, Timothy Wengert, Traci C. West, Merold Westphal, David Wetherell, Barbara Wheeler, Carolinne White, Jean-Paul Wiest, Frans Wijsen, Terry L. Wilder, Felix Wilfred, Rebecca Wilkin, Daniel H. Williams, D. Newell Williams, Michael A. Williams, Vincent L. Wimbush, Gabriele Winkler, Anders Winroth, Lauri Emílio Wirth, James A. Wiseman, Ebba Witt-Brattström, Teofil Wojciechowski, John Wolffe, Kenman L. Wong, Wong Wai Ching, Linda Woodhead, Wendy M. Wright, Rose Wu, Keith E. Yandell, Gale A. Yee, Viktor Yelensky, Yeo Khiok-Khng, Gustav K. K. Yeung, Angela Yiu, Amos Yong, Yong Ting Jin, You Bin, Youhanna Nessim Youssef, Eliana Yunes, Robert Michael Zaller, Valarie H. Ziegler, Barbara Brown Zikmund, Joyce Ann Zimmerman, Aurora Zlotnik, Zhuo Xinping
- Edited by Daniel Patte, Vanderbilt University, Tennessee
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- The Cambridge Dictionary of Christianity
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- 05 August 2012
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- 20 September 2010, pp xi-xliv
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Verification of data in congenital cardiac surgery
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- David R. Clarke, Linda S. Breen, Marshall L. Jacobs, Rodney C.G. Franklin, Zdzislaw Tobota, Bohdan Maruszewski, Jeffrey P. Jacobs
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- Cardiology in the Young / Volume 18 / Issue S2 / December 2008
- Published online by Cambridge University Press:
- 01 December 2008, pp. 177-187
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Accurate, complete data is now the expectation of patients, families, payers, government, and even media. It has become an obligation of those practising congenital cardiac surgery. Appropriately, major professional organizations worldwide are assuming responsibility for the data quality in their respective registry databases.
The purpose of this article is to review the current strategies used for verification of the data in the congenital databases of The Society of Thoracic Surgeons, The European Association for Cardio-Thoracic Surgery, and The United Kingdom Central Cardiac Audit Database. Because the results of the initial efforts to verify data in the congenital databases of the United Kingdom and Europe have been previously published, this article provides a more detailed look at the current efforts in North America, which prior to this article have not been published. The discussion and presentation of the strategy for the verification of data in the congenital heart surgery database of The Society of Thoracic Surgeons is then followed by a review of the strategies utilized in the United Kingdom and Europe. The ultimate goal of sharing the information in this article is to provide information to the participants in the databases that track the outcomes of patients with congenitally malformed hearts. This information should help to improve the quality of the data in all of our databases, and therefore increase the utility of these databases to function as a tool to optimise the management strategies provided to our patients.
The need for accurate, complete and high quality Congenital Heart Surgery outcome data has never been more pressing. The public interest in medical outcomes is at an all time high and “pay for performance” is looming on the horizon. Information found in administrative databases is not risk or complexity adjusted, notoriously inaccurate, and far too imprecise to evaluate performance adequately in congenital cardiac surgery. The Society of Thoracic Surgeons and European Association for Cardio-Thoracic Surgery databases contain the elements needed for assessment of quality of care provided that a mechanism exists within these organizations to guarantee the completeness and accuracy of the data. The Central Cardiac Audit Database in the United Kingdom has an advantage in this endeavour with the ability to track and verify mortality independently, through their National Health Service.
A combination of site visits with “Source Data Verification”, in other words, verification of the data at the primary source of the data, and external verification of the data from independent databases or registries, such as governmental death registries, may ultimately be required to allow for optimal verification of data. Further research in the area of verification of data is also necessary. Data must be verified for both completeness and accuracy.
Nomenclature and databases for the surgical treatment of congenital cardiac disease – an updated primer and an analysis of opportunities for improvement
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- Jeffrey Phillip Jacobs, Marshall Lewis Jacobs, Constantine Mavroudis, Carl Lewis Backer, Francois G. Lacour-Gayet, Christo I. Tchervenkov, Rodney C. G. Franklin, Marie J. Béland, Kathy J. Jenkins, Hal Walters III, Emile A. Bacha, Bohdan Maruszewski, Hiromi Kurosawa, David Robinson Clarke, J. William Gaynor, Thomas L. Spray, Giovanni Stellin, Tjark Ebels, Otto N. Krogmann, Vera D. Aiello, Steven D. Colan, Paul Weinberg, Jorge M. Giroud, Allen Everett, Gil Wernovsky, Martin J. Elliott, Fred H. Edwards
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- Cardiology in the Young / Volume 18 / Issue S2 / December 2008
- Published online by Cambridge University Press:
- 01 December 2008, pp. 38-62
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This review discusses the historical aspects, current state of the art, and potential future advances in the areas of nomenclature and databases for the analysis of outcomes of treatments for patients with congenitally malformed hearts. We will consider the current state of analysis of outcomes, lay out some principles which might make it possible to achieve life-long monitoring and follow-up using our databases, and describe the next steps those involved in the care of these patients need to take in order to achieve these objectives. In order to perform meaningful multi-institutional analyses, we suggest that any database must incorporate the following six essential elements: use of a common language and nomenclature, use of an established uniform core dataset for collection of information, incorporation of a mechanism of evaluating case complexity, availability of a mechanism to assure and verify the completeness and accuracy of the data collected, collaboration between medical and surgical subspecialties, and standardised protocols for life-long follow-up.
During the 1990s, both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons created databases to assess the outcomes of congenital cardiac surgery. Beginning in 1998, these two organizations collaborated to create the International Congenital Heart Surgery Nomenclature and Database Project. By 2000, a common nomenclature, along with a common core minimal dataset, were adopted by The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons, and published in the Annals of Thoracic Surgery. In 2000, The International Nomenclature Committee for Pediatric and Congenital Heart Disease was established. This committee eventually evolved into the International Society for Nomenclature of Paediatric and Congenital Heart Disease. The working component of this international nomenclature society has been The International Working Group for Mapping and Coding of Nomenclatures for Paediatric and Congenital Heart Disease, also known as the Nomenclature Working Group. By 2005, the Nomenclature Working Group crossmapped the nomenclature of the International Congenital Heart Surgery Nomenclature and Database Project of The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons with the European Paediatric Cardiac Code of the Association for European Paediatric Cardiology, and therefore created the International Paediatric and Congenital Cardiac Code, which is available for free download from the internet at [http://www.IPCCC.NET].
This common nomenclature, the International Paediatric and Congenital Cardiac Code, and the common minimum database data set created by the International Congenital Heart Surgery Nomenclature and Database Project, are now utilized by both The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons. Between 1998 and 2007 inclusive, this nomenclature and database was used by both of these two organizations to analyze outcomes of over 150,000 operations involving patients undergoing surgical treatment for congenital cardiac disease.
Two major multi-institutional efforts that have attempted to measure the complexity of congenital heart surgery are the Risk Adjustment in Congenital Heart Surgery-1 system, and the Aristotle Complexity Score. Current efforts to unify the Risk Adjustment in Congenital Heart Surgery-1 system and the Aristotle Complexity Score are in their early stages, but encouraging. Collaborative efforts involving The European Association for Cardio-Thoracic Surgery and The Society of Thoracic Surgeons are under way to develop mechanisms to verify the completeness and accuracy of the data in the databases. Under the leadership of The MultiSocietal Database Committee for Pediatric and Congenital Heart Disease, further collaborative efforts are ongoing between congenital and paediatric cardiac surgeons and other subspecialties, including paediatric cardiac anaesthesiologists, via The Congenital Cardiac Anesthesia Society, paediatric cardiac intensivists, via The Pediatric Cardiac Intensive Care Society, and paediatric cardiologists, via the Joint Council on Congenital Heart Disease and The Association for European Paediatric Cardiology.
In finalising our review, we emphasise that analysis of outcomes must move beyond mortality, and encompass longer term follow-up, including cardiac and non cardiac morbidities, and importantly, those morbidities impacting health related quality of life. Methodologies must be implemented in these databases to allow uniform, protocol driven, and meaningful, long term follow-up.
Databases for assessing the outcomes of the treatment of patients with congenital and paediatric cardiac disease – the perspective of cardiac surgery
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- Marshall Lewis Jacobs, Jeffrey Phillip Jacobs, Rodney C.G. Franklin, Constantine Mavroudis, Francois Lacour-Gayet, Christo I. Tchervenkov, Hal Walters III, Emile A. Bacha, David Robinson Clarke, J. William Gaynor, Thomas L. Spray, Giovanni Stellin, Tjark Ebels, Bohdan Maruszewski, Zdzislaw Tobota, Hiromi Kurosawa, Martin Elliott
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- Cardiology in the Young / Volume 18 / Issue S2 / December 2008
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- 01 December 2008, pp. 101-115
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This review includes a brief discussion, from the perspective of cardiac surgeons, of the rationale for creation and maintenance of multi-institutional databases of outcomes of congenital heart surgery, together with a history of the evolution of such databases, a description of the current state of the art, and a discussion of areas for improvement and future expansion of the concept. Five fundamental areas are reviewed: nomenclature, mechanism of data collection and storage, mechanisms for the evaluation and comparison of the complexity of operations and stratification of risk, mechanisms to ensure the completeness and accuracy of the data, and mechanisms for expansion of the current capabilities of databases to include comparison and sharing of data between medical subspecialties. This review briefly describes several European and North American initiatives related to databases for pediatric and congenital cardiac surgery the Congenital Database of The European Association for Cardio-Thoracic Surgery, the Congenital Database of The Society of Thoracic Surgeons, the Pediatric Cardiac Care Consortium, and the Central Cardiac Audit Database in the United Kingdom. Potential means of approaching the ultimate goal of acquisition of long-term follow-up data, and input of this data over the life of the patient, are also considered.
4 - Persistent Public Sector Deficits & Macroeconomic Instability in Ghana
- from PART TWO - MACROECONOMY, TRADE & FINANCE
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- By Charles E. Youngblood, United States Agency for International Development (USAID), David L. Franklin, Sigma One Corporation, North Carolina
- Edited by Ernest Aryeetey, University of Ghana at Legon, Ravi Kanbur, Cornell University
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- Economy of Ghana
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- 05 February 2013
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Summary
Introduction
Over the decade of the 1990s Ghana was considered an example among African countries regarding the pace and extent of the economic reforms affecting its trade regime, its financial sector, and the conduct of its fiscal and monetary policy (Kapur et al., 1991). This reputation was earned in the latter half of the 1980s when the government instituted a series of policy measures to rescue the economy from the depths of its most severe crisis in the post-colonial period. The Economic Recovery Programme (ERP) placed Ghana on a path of modest economic growth: from a per capita GDP of $309 in 1983,1 per capita income grew at an average rate of 1.8% per year to $371 in 1993. Despite this early promise, Ghana's economic growth has continued to be moderate; per capita incomes grew at only 1.5% per year from 1993 through 2000 to reach $411. At this rate, per capita income will double in 50 years. This is a far cry from the ambitious growth rates envisioned in official growth plans such as Vision 2020, which was predicated on per capita growth rates of 5-7% per annum. Yet, it was perplexing to most observers that in March 2001 the recently elected government of the New Patriotic Party (NPP) sought relief under the Highly Indebted Poor Countries (HIPC) initiative, as it dealt with the aftermath of a severe currency crisis.
List of Contributors
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- By Ralph Adolphs, Bernard J. Baars, John A. Bargh, Jesse M. Bering, David F. Bjorklund, Joseph E. Bogen, Rebekah Bradley, Wallace Chafe, Michael C. Corballis, Diego Cosmelli, Jean-Marie Danion, Richard J. Davidson, Steven W. Day, Georges Dreyfus, John D. Dunne, Stan Franklin, Helena Hong Gao, Lisa Geraci, Deborah E. Hannula, J. Allan Hobson, Caroline Huron, John F. Kihlstrom, Asher Koriat, Uriah Kriegel, Jean-Philippe Lachaux, Charles D. Laughlin, Antoine Lutz, Drew McDermott, Katharine McGovern, Keith Oately, Suparna Rajaram, Henry L. Roediger III, Edmund T. Rolls, Daniel L. Schachter, William Seager, Daniel J. Simons, Scott D. Slotnick, Henry Stapp, Petra Stoerig, Ron Sun, Evan Thompson, C. Jason Throop, Rebecca Todd, Carlo Umiltà, David E. Warren, Joel Weinberger, Drew Westen, Dan Zahavi, Philip David Zelazo
- Edited by Philip David Zelazo, University of Toronto, Morris Moscovitch, University of Toronto, Evan Thompson, University of York
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- The Cambridge Handbook of Consciousness
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- 05 June 2012
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- 14 May 2007, pp -
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