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: Introduction: The widespread implementation of molecular HIV surveillance (MHS) has resulted in an increased discussion about the ethical, human rights and public health implications of MHS. We narrate our process of pausing our research that uses data collected through MHS in response to these growing concerns and summarize the key lessons we learned through conversations with community members. Methods: The original study aimed to describe HIV transmission patterns by age and race/ethnicity among men who have sex with men in King County, Washington, by applying probabilistic phylodynamic modelling methods to HIV‐1 pol gene sequences collected through MHS. In September 2020, we paused the publication of this research to conduct community engagement: we held two public‐facing online presentations, met with a national community coalition that included representatives of networks of people living with HIV, and invited two members of this coalition to provide feedback on our manuscript. During each of these meetings, we shared a brief presentation of our methods and findings and explicitly solicited feedback on the perceived public health benefit and potential harm of our analyses and results. Results: Some community concerns about MHS in public health practice also apply to research using MHS data, namely those related to informed consent, inference of transmission directionality and criminalization. Other critiques were specific to our research study and included feedback about the use of phylogenetic analyses to study assortativity by race/ethnicity and the importance of considering the broader context of stigma and structural racism. We ultimately decided the potential harms of publishing our study—perpetuating racialized stigma about men who have sex with men and eroding the trust between phylogenetics researchers and communities of people living with HIV—outweighed the potential benefits. Conclusions: HIV phylogenetics research using data collected through MHS data is a powerful scientific technology with the potential to benefit and harm communities of people living with HIV. Addressing criminalization and including people living with HIV in decision‐making processes have the potential to meaningfully address community concerns and strengthen the ethical justification for using MHS data in both research and public health practice. We close with specific opportunities for action and advocacy by researchers., INTRODUCTION HIV surveillance systems are critical for monitoring HIV epidemics, understanding disparities along the HIV care continuum and directing services to communities most impacted by HIV. In the United States, [...]

Context Health behaviour scores are associated with disproportionate mortality in deprived populations. However, previous studies lack weighted scores or examine few behaviours. A score that accounts for both the relative effects of a wide range of behaviours and socioeconomic factors could inform policy and be developed to convey personalised risk. Objective Create a weighted health behaviour score and examine for effects of socioeconomic deprivation on association between score and all-cause mortality. Study Design and Analysis Cox proportional hazard models of baseline self-reported health behaviour data prospectively linked to registries. Models adjusted for sociodemographics and health conditions. Mortality associated with each behaviour determined score weighting. Dataset UK Biobank cohort (n=502,459) recruited 2006-2010. Population Studied 220,197 participants with complete data. Intervention/Instrument Behaviours: smoking, alcohol, physical activity, TV time, sleep, added salt, social isolation, and intake of red meat, processed meat, oily fish, and fruit and vegetables. Behaviours were classified as unhealthy according to national guidelines or latest evidence. Socioeconomic deprivation was measured by Townsend deprivation index; an area-based measure comprising car ownership, household overcrowding, owner occupation, and unemployment. Outcome Measures All-cause mortality Results Over a median follow up of 11.6 years, 9,739 (4.1%) participants died. Compared to no unhealthy behaviours, each behaviour was associated with all-cause mortality. Smoking and social isolation were associated with notably higher mortality; HR (95%CIs): 2.47 (2.25-2.70) and 1.69 1.54-1.86), respectively. Awarding 1 point for each 40% increment in risk resulted in awarding smoking 4 points, social isolation 2 points, and all other behaviours 1 point each. There was a dose-response increment for all-cause mortality HR with each additional point of weighted score. Associations were stronger in more deprived tertiles. With least deprived and lowest score as reference, HRs (95%CIs) for highest score were 2.80 (1.73-2.89) in the least deprived and 3.58 (3.16-4.06) in the most deprived. Conclusions A comprehensive weighted health behaviour score has strong associations with mortality and associations are stronger in more deprived participants. A weighted behaviour score that accounts for socioeconomic deprivation could be developed to communicate personalised risk., Presenters Hamish Foster, BSc, MBBS, DTMH, Jason Gill, PhD, BSc MSc FHEA FRCPE, Frances Mair, MD, FRCGP, Bhautesh Jani, PhD, MB ChB, MRCGP, Kate O'Donnell, PhD, BSc, MPH, BSc (Hons), [...]

Lyme disease is caused by Borrelia burgdorferi spirochetes, which are transmitted to humans by certain Ixodes spp. ticks (1). The infection can involve multiple organ systems and is treatable with [...]

Lyme disease is caused by infection with certain Borrelia spirochetes and transmitted to humans by Ixodes ticks (1). It is the most commonly reported vectorborne disease in the United States, [...]

Since its 1947 discovery in Uganda, Zika virus (ZIKV) was restricted to sporadic human infections in Africa and Asia until 2007, when a large outbreak occurred in Micronesia, followed by [...]

Standardizing medical data collection across the globe could yield valuable insights into the distribution of this often-fatal disease. Standardizing medical data collection across the globe could yield valuable insights into the distribution of this often-fatal disease., Author(s): Andrada Fiscutean Author Affiliations: Clarifying the burden of ovarian cancer In one of the largest oncology clinics in northern Nigeria, a ragged notebook with torn, tattered pages serves as [...]

Background: National joint replacement registries outside North America have been effective in reducing revision risk. However, there is little information on the role of smaller regional registries similar to those [...]

: Introduction: Achieving UNAIDS 90‐90‐90 targets is a crucial step towards ending the AIDS epidemic. Many countries have published estimates of care cascades, although often with methodological limitations. We describe an approach that used the national HIV registry as a starting‐point to determine the HIV care cascade and resulting UNAIDS 90‐90‐90 estimates for Singapore in 2014. Methods: HIV is a legally notifiable disease in Singapore. The anonymized HIV registry data provided for a back‐calculation model from the European Centre for Disease Prevention and Control to obtain 2014 estimates for the total number of persons living with HIV (PLHIV), and the count in the registry for proportions diagnosed with HIV and linked to care. Using additional data collected for a simple random sample from the registry, outcomes in 2015 and 2016 were ascertained retrospectively to derive proportions for those retained in care, on antiretroviral therapy, and achieved viral suppression. Findings were extrapolated to derive national estimates and UN90‐90‐90 estimates. Bootstrapped samples from the model and sample were used to derive 95% confidence intervals. Results: An estimated 6900 (95% CI 6650, 7050) persons were living with HIV and AIDS in 2014. Of these, 4948 were diagnosed with HIV, and 4820 had been linked to care. The random sample of 500 persons was further analysed, and of these, 87.2% were retained in care, 84.6% on antiretroviral therapy, and 79.6% had suppressed viral loads. The proportions of HIV‐infected individuals on antiretroviral therapy and achieving viral suppression were 60.7% (95% CI 58.4, 63.6) and 57.1% (95% CI 55.0, 60.5) respectively. The corresponding UNAIDS 90‐90‐90 estimates were 71.7% (95% CI 70.0, 74.2) of all persons diagnosed; 84.6% (95% CI 81.6, 87.4) of diagnosed persons being on antiretroviral therapy, and 94.1% (95% CI 91.6, 96.2) of persons on therapy having achieved viral suppression. Conclusions: A national HIV registry, alongside back‐calculation and additional data from a sample, can be used to estimate attainment of UNAIDS 90‐90‐90 targets and identify system gaps. The registry had advantages of providing a well‐established, comprehensive capture of diagnosed persons and easily accessible data. The same approach can be used elsewhere if similar data are available., Introduction Combination antiretroviral therapy (ART) has greatly reduced HIV‐associated mortality, morbidity and transmissibility. However, new infections, diagnoses of AIDS and deaths attributable to HIV/AIDS remain high. In 2014, the Joint [...]

To speed research, express conclusions as testable statements, and incorporate testing into training. To speed research, express conclusions as testable statements, and incorporate testing into training., Author(s): Yusuf A. Hannun Author Affiliations: Build a registry of results that students can replicate Earlier this month, a large-scale replication project underscored just how hard it is to repeat [...]

Objective: Radical prostatectomy (RP) as a first line treatment of prostate cancer was rare prior to the advent of prostate specific antigen (PSA) testing, yet little is known of its use and outcomes in a population setting. We described baseline characteristics of cases in the Victorian Radical Prostatectomy Register (VRPR), investigated possible associations between demographic characteristics and characteristics at diagnosis and at surgery and trends over time. Methods: The VRPR is a population-based series of all RPs performed in Victoria from July 1995 to December 2000 (n=2,154). Results: On average, socio-economic status for cases was higher than for the general Victorian population (34% vs 20% in the highest quintile respectively, p Conclusion and Implications: The VRPR provides a unique whole of population based description of radical prostatectomy in Victoria, confirms findings previously reported in single institution clinical series overseas such as migration to younger age at surgery and to Gleason scores 6 to 7, and provides a resource for evaluating RP outcomes in the future. Key words: prostate cancer, radical prostatectomy, population-based register, socio-economic status. Aust NZ J Public Health. 2009; 33:527-33 doi: 10.1111/j.1753-6405.2009.00448.x

Background: The analysis aimed to assess the Indigenous status of an increasing number of deaths not coded with a useable Indigenous status from 1997 to 2002 and its impact on reported recent gains in Indigenous mortality. Methods: The Indigenous status of WA death records with a missing Indigenous status was determined based upon data linkage to three other data sources (Hospital Morbidity Database System, Mental Health Information System and Midwives Notification System). Results: Overall, the majority of un-coded cases were assigned an Indigenous status, with 5.9% identified as Indigenous from the M1 series and 7.5% from the M2 series. The significant increase in Indigenous male LE of 5.4 years from 1997 to 2002 decreased to 4.0 and 3.6 years using the M1 and M2 series, respectively, but remained significant. For Indigenous females, the non-significant increase in LE of 1.8 years from 1997 to 2002 decreased to 1.0 and 0.6 years. Furthermore, annual all-cause mortality rates were higher than in the original data for both genders, but the significant decline for males remained. Conclusion: Through data linkage, the increasing proportion of deaths not coded with a useable Indigenous status was shown to impact on Indigenous mortality statistics in Western Australia leading to an overestimate of improvements in life expectancy. Greater attention needs to be given to better identification and recording of Indigenous identifiers if real improvements in health status are to be demonstrated. A system that captures an individual's Indigenous status once and is reflected in all health and administrative data systems needs consideration within Australia. Key words: Indigenous, Aboriginal, mortality, life expectancy, data linkage. doi: 10.1111/j.1753-6405.2009.00403.x

Amyotrophic lateral sclerosis (ALS) is a progressive and often fatal neuromuscular disease. Most people die within 2-5 years of being diagnosed with ALS (Mitsumoto, Chad, & Pioro, 1998). Community concerns [...]

Context: Seamless communication between different pathology information systems require a standard set of terminology. But a single standard is difficult to implement. This paper describes a technique that allows independent systems to maintain their current local set of terminology yet allows them to exchange data with other systems. Objective: To describe how a metadata registry can resolve issues in semantic consistency between disparate systems. Design: A subset of a pathology report templates will be used as an example for this paper. Templates from 2 different systems and their incompatibility will be shown. Using the principle of a metadata registry as proposed by ISO 11179, we will demonstrate using schemas how seamless exchange can occur between these 2 different systems. Setting: Theoretical exchange of data between 2 separate systems. Results: The metadata registry schema clearly shows an advantage over the nonmetadata system in maintaining semantic consistency between different systems. Conclusions: Pathology information systems need not migrate to standard sets of terminology to be able to exchange data. By maintaining a central metadata system, individual systems can keep their current terminology yet be able to exchange semantically consistent data with other systems., http://www.rplinux.com/apiii/2000/index.html Alvin B. Marcelo, MD (marcelo@nlm.nih.gov); Paul A. Fontelo, MD, MPH. National Library of Medicine, Bethesda, [...]

The University of Washington Physicians Network (UWPN) is a nonprofit primary care delivery system in Seattle with nine clinics linked by a computerized, networked clinical information system. In 1998, UWPN [...]

China's acceptance, along with India, into the new WHO International Clinical Trials Registry Platform will help spur greater transparency and registration of research involving human's in the world's most populous [...]

Byline: Otto Mehls (1), Raymond A. M. Donckerwolcke (2), Jochen H. H. Ehrich (3) Keywords: ERA-EDTA Registry; Re-establishment of registry Abstract: The European Dialysis and Transplant Association (EDTA) Registry was established in the mid 1960s and its annual reports for many years provided important information on the treatment of children in Europe with renal diseases. The last report of the former European Renal Association (ERA)-EDTA Registry, based in London, was in 1996. Unfortunately, shortly thereafter, for a number of reasons the Registry collapsed. However, in June 2000 the ERA-EDTA Registry was re-established in Amsterdam, The Netherlands, and the first report of this new European Registry on renal replacement therapy is now published. Effective collaboration of single national registries with the new ERA Registry is important for the future development of new successful treatment strategies in pediatric renal medicine. Author Affiliation: (1) Division of Pediatric Nephrology, Universitatskinderklinik, Im Neuenheimer Feld 150, 69120 Heidelberg, Germany (2) Afdeling Kindergeneeskunde, Postbus 5800, 6202 AZ Maastricht, The Netherlands (3) Kinderklinik der Medizinischen Hochschule Hannover, Carl Neuberg Strasse 1, 30625 Hannover, Germany Article History: Registration Date: 19/11/2003 Received Date: 03/09/2003 Accepted Date: 10/09/2003 Online Date: 19/12/2003

In many low- and middle-income countries, such as Viet Nam (photo box), injuries and violence are among the leading causes of death, but few such countries have a system to [...]