Over one-third of all births are to unwed parents. Adoption proceedings for these children can be delayed, contested, and disrupted when paternity is in question. Highly publicized court cases, suchas Baby Jessica's in which an unwed birth father contested her adoption and then initiated litigation, alerted the general public to this issue. Although state Putative Father Registries resolve paternity issues for in-state adoptions, only federal legislation creating a national registry can expedite permanency for children in interstate adoptions.
In: Twin research and human genetics: the official journal of the International Society for Twin Studies (ISTS) and the Human Genetics Society of Australasia, Band 16, Heft 1, S. 246-247
The National Malaysian Twin Registry was established in Royal College of Medicine, Perak, University Kuala Lumpur (UniKL) in June 2008 through a grant provided by UniKL. The general objective is to facilitate scientific research involving participation of twins and their family members in order to answer questions of health and wellbeing relevant to Malaysians. Recruitment is done via mass media, poster, and pamphlets. We now have 266 adult and 204 children twins registered. Several research projects including reproductive health study of twins and the role of co-bedding on growth and development of children are carried out. Registry holds annual activities for twins and seeks to provide health-related information for twins. We seek international collaboration.
In: Fitzgerald , M C , Curtis , K , Cameron , P A , Ford , J E , Howard , T S , Crozier , J A , Fitzgerald , A , Gruen , R L , Pollard , C & on behalf of the AusTQIP Consortium 2019 , ' The Australian Trauma Registry ' , ANZ Journal of Surgery , vol. 89 , no. 4 , pp. 286-290 . https://doi.org/10.1111/ans.14940
Introduction: Injuries are a major cause of disability and lost productivity. The case for a national trauma registry has been recognized by the Australian Commission on Safety and Quality in Health Care and at a policy level. Background: The need was flagged in 1993 by the Royal Australasian College of Surgeons and the Australasian Trauma Society. In 2003, the Centre of National Research and Disability funded the Australian and New Zealand National Trauma Registry Consortium, which produced three consecutive annual reports. The bi-national trauma minimum dataset was also developed during this time. Operations were suspended thereafter. Method: In response to sustained lobbying the Australian Trauma Quality Improvement Program including the Australian Trauma Registry (ATR) commenced in 2012, with data collection from 26 major trauma centres. An inaugural report was released in late 2014. Result: The Federal Government provided funding in December 2016 enabling the work of the ATR to continue. Data are currently being collected for cases that meet inclusion criteria with dates of injury in the 2017–2018 financial year. Since implementation, the number of submitted records has been increased from fewer than 7000 per year to over 8000 as completeness has improved. Four reports have been released and are available to stakeholders. Conclusion: The commitment shown by the College, other organizations and individuals to the vision of a national trauma registry has been consistent since 1993. The ATR is now well placed to improve the care of injured people.
Publisher's version (útgefin grein) ; Background: Severe asthma exerts a disproportionately heavy burden on patients and health care. Due to the heterogeneity of the severe asthma population, many patients need to be evaluated to understand the clinical features and outcomes of severe asthma in order to facilitate personalised and targeted care. The International Severe Asthma Registry (ISAR) is a multi-country registry project initiated to aid in this endeavour. Methods: ISAR is a multi-disciplinary initiative benefitting from the combined experience of the ISAR Steering Committee (ISC; comprising 47 clinicians and researchers across 29 countries, who have a special interest and/or experience in severe asthma management or establishment and maintenance of severe asthma registries) in collaboration with scientists and experts in database management and communication. Patients (=18 years old) receiving treatment according to the 2018 definitions of the Global Initiative for Asthma (GINA) Step 5 or uncontrolled on GINA Step 4 treatment will be included. Data will be collected on a core set of 95 variables identified using the Delphi method. Participating registries will agree to provide access to and share standardised anonymous patient-level data with ISAR. ISAR is a registered data source on the European Network of Centres for Pharmacoepidemiology and Pharmacovigilance. ISAR's collaborators include Optimum Patient Care, the Respiratory Effectiveness Group (REG) and AstraZeneca. ISAR is overseen by the ISC, REG, the Anonymised Data Ethics and Protocol Transparency Committee and the ISAR operational committee, ensuring the conduct of ethical, clinically relevant research that brings value to all key stakeholders. Conclusions: ISAR aims to offer a rich source of real-life data for scientific research to understand and improve disease burden, treatment patterns and patient outcomes in severe asthma. Furthermore, the registry will provide an international platform for research collaboration in respiratory medicine, with the overarching aim of improving primary and secondary care of adults with severe asthma globally. ; The International Severe Asthma Registry is conducted by Optimum Patient Care Global Limited, and co-funded by Optimum Patient Care Global Limited and AstraZeneca. ISAR is supported by grants from AstraZeneca and Optimum Patient Care (OPC) Global (a not-for-profit social enterprise). The ISAR steering committee (ISC) was involved in the development of the protocol and is responsible for approving research proposals via a democratic voting process. In addition to 47 clinicians and researchers with an interest and experience in severe asthma, the ISC also includes members of OPC and four medical experts from AstraZeneca. AstraZeneca reviewed the draft before submission; however, decision to submit was made by the authors. Medical writing support was funded by AstraZeneca in accordance with Good Publication Practice (GPP3) guidelines (http://www.ismpp.org/gpp3). ; Peer Reviewed
Harlan Carvey brings readers an advanced book on Windows Registry. The first book of its kind EVER -- Windows Registry Forensics provides the background of the Registry to help develop an understanding of the binary structure of Registry hive files. Approaches to live response and analysis are included, and tools and techniques for postmortem analysis are discussed at length. Tools and techniques will be presented that take the analyst beyond the current use of viewers and into real analysis of data contained in the Registry. Named a 2011 Best Digital Forens
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In: Twin research and human genetics: the official journal of the International Society for Twin Studies (ISTS) and the Human Genetics Society of Australasia, Band 22, Heft 6, S. 660-666
AbstractThe first twin study in Serbia began in 2011 as a part of the research project, 'Psychological Foundations of Mental Health: Hereditary and Environmental Factors'. At the same time, the research team from the Faculty of Philosophy and Faculty of Medicine in Novi Sad established the first Serbian twin registry. The registry is intended primarily for the purpose of the research in behavioral genetics, as well as potential future studies in human genetics. It includes information on 1658 volunteers, including twin-pairs, their parent and siblings. The behavioral genetic study of adult twins has been focused on the hereditary and environmental sources of variance of different psychological characteristics, such as personality traits, cognitive abilities, executive functions and aggression, as well as some anthropometric measures and aspects of mental and physical health. Certain molecular genetic analyses have also been performed. The research team is currently starting the longitudinal twin study of children, which will be focused on different indicators of emotional, cognitive and physical development.
Introduction: Injuries are a major cause of disability and lost productivity. The case for a national trauma registry has been recognized by the Australian Commission on Safety and Quality in Health Care and at a policy level. Background: The need was flagged in 1993 by the Royal Australasian College of Surgeons and the Australasian Trauma Society. In 2003, the Centre of National Research and Disability funded the Australian and New Zealand National Trauma Registry Consortium, which produced three consecutive annual reports. The bi-national trauma minimum dataset was also developed during this time. Operations were suspended thereafter. Method: In response to sustained lobbying the Australian Trauma Quality Improvement Program including the Australian Trauma Registry (ATR) commenced in 2012, with data collection from 26 major trauma centres. An inaugural report was released in late 2014. Result: The Federal Government provided funding in December 2016 enabling the work of the ATR to continue. Data are currently being collected for cases that meet inclusion criteria with dates of injury in the 2017–2018 financial year. Since implementation, the number of submitted records has been increased from fewer than 7000 per year to over 8000 as completeness has improved. Four reports have been released and are available to stakeholders. Conclusion: The commitment shown by the College, other organizations and individuals to the vision of a national trauma registry has been consistent since 1993. The ATR is now well placed to improve the care of injured people. ; Published version
In: Twin research and human genetics: the official journal of the International Society for Twin Studies (ISTS) and the Human Genetics Society of Australasia, Band 9, Heft 6, S. 941-949
AbstractThe Colorado Twin Registry (CTR) is a population-based registry housed at the Institute for Behavioral Genetics, University of Colorado. Recruited subjects' birth years date from 1968. Four samples comprise the CTR: the Community Twin Sample, Infant Twin Sample, Longitudinal Twin Sample, and the Early Reading Development Sample. Criteria for enrollment, recruitment strategies, demographic information and zygosity assignment are explained for each sample. In addition, 8 studies in which CTR twins have participated are highlighted. These include studies of early cognition, early reading ability, executive cognitive function, and vulnerability to substance abuse and antisocial behavior. Goals, measures, and brief results are provided for each study. The development of the CTR is an ongoing and evolving process, and it has proved to be a valuable resource, relatively representative of the population from which it was drawn.
Acknowledgements The authors thank the following individuals who contributed to the initial set-up of ISAR, provided input to the development of the protocol and/or were involved in local implementation of ISAR: Elisabeth Bel, Roland Buhl, Sverre Lehmann, Stelios Loukidis, Richard Martin, Juno Pak, Pearlanne Zelar ney, Joy Zimmer, Christena Kolakowski, Margo Brown, Jessica Cummings, Jennifer Brandorff, Seth Skelton, John Upham, Philip Bardin, Paul Reynolds, David Langton, Peter Middleton, Belinda Cochrane, Katya Vasileva Noleva, Plamen Hristov Yakovliev, Sonya Metodieva Genova, Violina Milchova Vasi leva, Darina Petrova Dimova, Nadezhda K Takovska, Cvetantka Hristova Odz hakova, Eleonora M Stamenova, Diana X Hristova, Vincente Plaza, Ian Hirsch, Cekomir Vodenicharov, Alexandrina Vodenicharova and Magdalena Alexandrova. Medical writing support was provided by Michelle Rebello, PhD, and Liam Gillies, PhD, of Cactus Communications (Mumbai, India). Funding The International Severe Asthma Registry is conducted by Optimum Patient Care Global Limited, and co-funded by Optimum Patient Care Global Limited and AstraZeneca. ISAR is supported by grants from AstraZeneca and Optimum Patient Care (OPC) Global (a not-for-profit social enterprise). The ISAR steering committee (ISC) was involved in the development of the protocol and is responsible for approving research proposals via a democratic voting process. In addition to 47 clinicians and researchers with an interest and experience in severe asthma, the ISC also includes members of OPC and four medical experts from AstraZeneca. AstraZeneca reviewed the draft before submission; however, decision to submit was made by the authors. Medical writing support was funded by AstraZeneca in accordance with Good Publication Practice (GPP3) guidelines (http://www.ismpp.org/gpp3). ; Peer reviewed ; Publisher PDF
In: Twin research and human genetics: the official journal of the International Society for Twin Studies (ISTS) and the Human Genetics Society of Australasia, Band 16, Heft 1, S. 185-189
The first Hungarian Twin Registry was established in Budapest in 1970 through the mandatory reporting of multiple-births. In the 1980s a second, volunteer adult registry was also founded. Unfortunately, both registries ceased to exist in the 1990s. Efforts started in 2006 to revive a Hungarian twin registry. The team spearheading this effort reports here on this progress. Currently, the voluntary Hungarian Twin Registry consists of 310 adult twin pairs and multiplets. Current research focuses on cardiovascular and respiratory health and yielded multiple awards and publications. Efforts are on the way to expand into social, psychological, and obesity studies.
In: Twin research and human genetics: the official journal of the International Society for Twin Studies (ISTS) and the Human Genetics Society of Australasia, Band 22, Heft 6, S. 647-650
AbstractThe Norwegian Twin Registry (NTR) is maintained as a research resource that was compiled by merging several panels of twin data that were established for research into physical and mental health, wellbeing and development. NTR is a consent-based registry. Where possible, data that were collected in previous studies are curated for secondary research use. A particularly valuable potential benefit associated with the Norwegian twin data lies in the opportunities to expand and enhance the data through record linkage to nationwide registries that cover a wide array of health data and other information, including socioeconomic factors. This article provides a brief description of the current NTR sample and data collections, information about data access procedures and an overview of the national registries that can be linked to the NTR for research projects.