A December 2010 meeting, “Down Syndrome: National Conference on Patient Registries, Research Databases, and Biobanks,” was jointly sponsored by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) at the National Institutes of Health (NIH) in Bethesda, MD, and the Global Down Syndrome Foundation (GDSF)/Linda Crnic Institute for Down Syndrome based in Denver, CO. Approximately 70 attendees and organizers from various advocacy groups, federal agencies (Centers for Disease Control and Prevention, and various NIH Institutes, Centers, and Offices), members of industry, clinicians, and researchers from various academic institutions were greeted by Drs. Yvonne Maddox, Deputy Director of NICHD, and Edward McCabe, Executive Director of the Linda Crnic Institute for Down Syndrome. They charged the participants to focus on the separate issues of contact registries, research databases, and biobanks through both podium presentations and breakout session discussions. Among the breakout groups for each of the major sessions, participants were asked to generate responses to questions posed by the organizers concerning these three research resources as they related to Down syndrome and then to report back to the group at large with a summary of their discussions. This report represents a synthesis of the discussions and suggested approaches formulated by the group as a whole.
Down syndrome; registry; database; biobank; trisomy 21
The Avian Genomics Conference and Gene Ontology Annotation Workshop brought together researchers and students from around the world to present their latest research addressing the delivery of value from the billions of base-pairs of Archosaur sequence that have become available in the last few years. This editorial describes the conference itself and introduces the ten peer-reviewed manuscripts accepted for publications in the proceedings. These manuscripts address issues ranging from the poultry industry view of USDA genomics policy to the genomics of a wide variety of Archeosaur species including chicken, duck, alligator, and condors and their pathogens.
The Texas Center for Health Disparities, a National Institute on Minority Health and Health Disparities Center of Excellence, presents an annual conference to discuss prevention, awareness education and ongoing research about health disparities both in Texas and among the national population. The 2013 Texas Conference on Health Disparities brought together experts, in research, patient care and community outreach, on the “Intersection of Smoking, Human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) and Cancer”. Smoking, HIV/AIDS and cancer are three individual areas of public health concern, each with its own set of disparities and risk factors based on race, ethnicity, gender, geography and socio-economic status. Disparities among patient populations, in which these issues are found to be comorbid, provide valuable information on goals for patient care. The conference consisted of three sessions addressing “Comorbidities and Treatment”, “Public Health Perspectives”, and “Best Practices”. This article summarizes the basic science, clinical correlates and public health data presented by the speakers.
Cancer; health disparities; human immunodeficiency virus/acquired immunodeficiency syndrome; smoking
There are striking disparities in health status, access to health care, and risk factors among racial and ethnic minorities and the general population in Texas. The disparities are multifactorial comprising genetic, sociocultural, and environmental variables. The Texas Center for Health Disparities (TCHD), a NIMHD Center of Excellence (COE), aims to prevent, reduce, and eliminate health disparities in the communities through research, education, and community-based programs. As part of the center's outreach activities, an annual conference is organized to build awareness and knowledge on health disparities. The overall theme for the 2012 conference was “Battling Breast Cancer Disparities: Frontline Strategies”. The scientific program consisted of three sessions: “Breakthroughs in Breast Cancer”, “Triple Negative Breast Cancer,” and “Hormone Resistant Breast Cancer” featuring different aspects of bench-research from molecular biology, proteomics, and genetics to the clinical aspects such as detection, diagnosis, and finally to community-based approaches. This article summarizes the proceedings of the meeting providing salient strategies and best practices presented by the speakers.
Breast cancer; conference; disparities; proceedings; triple negative breast cancer
Objective: To demonstrate that Philip Morris and British American Tobacco Company attempted to initiate a wide ranging campaign to undermine the success of the 8th World Conference on Tobacco or Health held in Buenos Aires, Argentina, in 1992.
Data sources: Publicly available tobacco industry documents housed in Minneapolis, Minnesota, USA; Guilford, UK; on-line document websites; and telephone interviews with informed parties.
Study selection: Those documents determined to be relevant to the companies' campaigns against the 8th World Conference on Tobacco or Health.
Data extraction: Revision of chapter VIII of the July 2000 WHO report by a committee of experts, entitled: Tobacco company strategies to undermine tobacco control activities at the World Health Organization: report of the committee of experts on tobacco industry documents.
Data synthesis: Internal documents describe proposed media and science orientated campaigns developed by BAT, Philip Morris, and their consultants to divert attention away from the conference.
Results and conclusion: This work shows that the tobacco industry has the resources and vested interest to combat perceived threats in its regional operating markets, in this case its Latin American market. It is important for the worldwide public heath community to become aware of the numerous ways in which the tobacco industry and its front groups can work against international tobacco control meetings, even including the manipulation of or working with other public health groups to oppose tobacco control efforts. Future world conference planners and participants should be aware that the tobacco industry is likely to continue to employ such methodology. There is no reason to think that the industry is paying less attention to such conferences in the present or future. Rather, it is likely the industry will adopt and expand strategies that were successful while abandoning those that were not effective. Required disclosure of financial support by all participants at all tobacco scientific conferences is recommended. For the tobacco control community, we also recommend careful coalition building and networking with other public health groups on the ways tobacco is implicated in other public health issues.
The NF Conference is the largest annual gathering of researchers and clinicians focused on neurofibromatosis and has been convened by the Children’s Tumor Foundation for over 20 years. The 2009 NF Conference was held in Portland, Oregon from June 13th – June 16th, 2009 and co-chaired by Kathryn North from the University of Sydney and The Children’s Hospital at Westmead, Sydney, Australia; and Joseph Kissil from the Wistar Institute, Philadelphia. The Conference included 80 platform presentations in 9 sessions over 4 days; over 100 abstracts presented as posters; and three Keynote presentations. To date, there have been tremendous advances in basic research in the pathogenesis of neurofibromatosis, and more recently in progress toward identifying effective drug therapies and the commencement of neurofibromatosis clinical trials. The NF Conference attendees have significantly increased (doubling from 140 in 2005 to 280 attending in 2009) with a significant increase in attendance of physicians and clinical researchers. Correspondingly the NF Conference scope has expanded to include translational research, clinical trials and clinical management issues while retaining a core of basic research. These themes are reflected in the highlights from the 2009 NF Conference presented here.
Neurofibromatosis type 1; neurofibromatosis type 2; NF1; NF2; schwannomatosis; tumor suppressor; Ras/MAPK; learning disabilities; bone dysplasia
In June 2008, the American Association for the Study of Liver Diseases (AASLD) sponsored the Henry M. and Lillian Stratton Basic Research Single-Topic Conference on the Pathobiology of Biliary Epithelia and Cholangiocarcinoma, which was held in Atlanta, GA. Attendees from 12 different countries participated in this conference, making it a truly international scientific event. Both oral and poster presentations were given by multidisciplinary experts, who highlighted important areas of current basic and translational research on biliary epithelial cell biology and pathophysiology, and on the etiology, cellular and molecular pathogenesis, and target-based therapy of cholangiocarcinoma. The specific goals and objectives of the conference were: (1) to advance knowledge of basic and molecular mechanisms underlying developmental and proliferative disorders of the biliary tract; (2) to foster a better and more comprehensive understanding of mechanisms regulating biliary epithelial (cholangiocyte) growth and transport, signaling, cell survival, and abnormalities that result in disease; and (3) to understand basic mechanisms of cholangiocarcinoma development and progression, with the added goal of identifying and exploiting potentially critical molecular pathways that may be targeted therapeutically. A number of interrelated themes emerged from the oral and poster sessions that affected current understandings of the complex organization of transcriptional and signaling mechanisms that regulate bile duct development, hepatic progenitor cell expansion, cholangiocyte secretory functions and proliferation, and mechanisms of cholangiocarcinogenesis and malignant cholangiocyte progression. Most notable were the critical questions raised as to how best to exploit aberrant signaling pathways associated with biliary disease as potential targets for therapy.
The MCBIOS 2004 conference brought together regional researchers and students in biology, computer science and bioinformatics on October 7th-9th 2004 to present their latest work. This editorial describes the conference itself and introduces the twelve peer-reviewed manuscripts accepted for publication in the Proceedings of the MCBIOS 2004 Conference. These manuscripts included new methods for analysis of high-throughput gene expression experiments, EST clustering, analysis of mass spectrometry data and genomic analysis
bioinformatics; conferences; MCBIOS; ISCB
The First International Conference on Toxicogenomics Integrated with Environmental Sciences (TIES-2007) was held at the North Carolina State University McKimmon Center in Raleigh, North Carolina on October 25th and 26th, 2007. Based on the presentations at the conference and the commitment or interest of the presenters to contribute a manuscript of their research, we compiled this collection of articles as proceedings of the conference and an in-depth topical review of the utility of bioinformatics in the fields of toxicogenomics and environmental genomics.
This overview describes the goals and objectives of the third conference conducted as part of the Cognitive Neuroscience Treatment Research to Improve Cognition in Schizophrenia (CNTRICS) initiative. This third conference was focused on selecting specific paradigms from cognitive neuroscience that measured the constructs identified in the first CNTRICS meeting, with the goal of facilitating the translation of these paradigms into use in clinical trials contexts. To identify such paradigms, we had an open nomination process in which the field was asked to nominate potentially relevant paradigms and to provide information on several domains relevant to selecting the most promising tasks for each construct (eg, construct validity, neural bases, psychometrics, availability of animal models). Our goal was to identify 1–2 promising tasks for each of the 11 constructs identified at the first CNTRICS meeting. In this overview article, we describe the on-line survey used to generate nominations for promising tasks, the criteria that were used to select the tasks, the rationale behind the criteria, and the ways in which breakout groups worked together to identify the most promising tasks from among those nominated. This article serves as an introduction to the set of 6 articles included in this special issue that provide information about the specific tasks discussed and selected for the constructs from each of 6 broad domains (working memory, executive control, attention, long-term memory, perception, and social cognition).
cognition; treatment; schizophrenia
A consensus conference including thirty experts was held in April, 2007, to discuss risk factors for breast cancer and their management. Four categories of risk were outlined, from breast cancer “average” through “very high” risk, the latter including individuals with high penetrance BRCA1 / 2 gene mutations. Guidelines for management of patients in each of these categories were discussed, with the major portion of the conference being devoted to individuals with BRCA1 / 2 mutations. Prevalence of these mutations in the general populations was estimated to be 1 in 250–500 individuals, with an increased prevalence in Ashkenazic Jews and other founder groups. Risk reduction strategies for these individuals include surveillance, with or without chemoprevention drugs, or surgical procedures to remove the organs at risk, i.e., bilateral mastectomy and / or bilateral salpingo-oophorectomy. These risk reduction strategies were evaluated fully, and recommendations were made for the care of patients in each of the risk categories. These guidelines for patient care were approved by the entire group of experts.
BRCA; breast cancer; genetics; risk
The inaugural European Emergency Medical Dispatch conference was held in Stockholm, Sweden, in May 2013. We provide a synopsis of the conference proceedings, highlight key topic areas of emergency medical dispatch and suggest future research priorities.
On November 3rd and 4th, 2012, Manipal Hospital, Bangalore and Association for the Accreditation of Human Research Protection Programs co-hosted a regional conference titled “Practical Solutions to Challenges in Research Ethics.” This paper is a synthesis of the major themes of the conference. The authors discuss the current state of the clinical research in India today, need to focus on human research protection programs rather than Ethics Committees or institutional review boards, the factors that influence high-quality research and some practical solutions to improving the quality of research and the protection of research participants.
Ethics committees; quality improvement; research protections
The International Society for Strategic Studies in Radiology (IS3R) brings together thought leaders from academia and industry from around the world to share ideas, points of view and new knowledge. This article summarizes the main concepts presented at the 2007 IS3R symposium, providing a window onto trends shaping the future of radiology. Topics addressed include new opportunities and challenges in the field of interventional radiology; emerging techniques for evaluating and improving quality and safety in radiology; and factors impeding progress in molecular imaging and nanotechnology and possible ways to overcome them. Regulatory hurdles to technical innovation and drug development are also discussed more broadly, along with proposals for addressing regulators’ concerns and streamlining the regulatory process.
Interventional radiology; Molecular imaging; Device approval processes; Drug approval processes; Health-care quality; Radiology; Leadership
Many investigators are concerned that the modes of implementation and enforcement of the federal regulations designed to protect children are unduly impeding pediatric clinical research.
To assess regulatory impediments to clinical research involving children and to develop recommendations to ameliorate them.
The Pediatric Endocrine Society and The Endocrine Society convened a consensus conference involving experts and stakeholders in patient-oriented research involving children and adolescents in 2008.
Following presentations that reviewed problematic issues around key regulations, participants divided into working groups to develop potential solutions that could be adopted at local and federal levels. Presentations to the full assembly were then debated. A writing committee then drafted a summary of the discussions and main conclusions, placing them in historical context, and submitted it to all participants for comment with the aim of developing consensus.
Recommendations designed to facilitate the ethical conduct of research involving children addressed the interpretation of ambiguous regulatory terms such as "minimal risk" and "condition" and called for the development by professional societies of best practice primers for common research procedures that would be informative to both investigators and institutional review boards. A call was issued for improved guidance from the Office for Human Research Protections and Food and Drug Administration as well as for the development by professional societies of a process to monitor progress in improving human subject research regulation. Finally, a need for systematic research to define the nature and extent of institutional obstacles to pediatric research was recognized.
Institutional Review Board; ethics; pediatrics; endocrinology; federal regulations; clinical research
Many developing countries now face the growing phenomenon of the double burden of disease. Most are still grappling with infectious diseases resulting from poor environmental sanitation and lack of access to good drinking water like malaria, cholera, and enteric fever. At the same time changes in diet and lifestyle in general in these countries is resulting in increasing numbers of people with obesity, sedentary life styles, increased salt intake from fast foods, increased smoking and consumption of alcohol and fizzy drinks, hypertension and diabetes. To increase the scope and depth of cardiovascular care in Ghana, the National Cardiothoracic Centre, (NCTC), organised the 2nd International Update Course in Cardiology for cardiologists and general practitioners, with emphasis on a practical approach to cardiology. Post conference evaluation indicated that the course was very useful especially for practitioners in district and regional hospitals. Close to 98% of the participants revealed that the update course will greatly impact positively on their management of cardiovascular diseases.
Cardiovascular disease; double burden of disease; noncommunicable disease; lifestyle modification
Immediately after the annual scientific meeting of the American Society of Hematology (ASH), a select group of clinical and laboratory investigators in myeloproliferative neoplasms (MPN) is summoned to a post-ASH conference on chronic myeloid leukemia and the BCR-ABL1-negative MPN. The 6th such meeting occurred on 13th–14th December 2011, in La Jolla, California, USA, under the direction of its founder, Dr. Tariq Mughal. The current document is the first of two reports on this post-ASH event and summarizes the most recent preclinical and clinical advances in polycythemia vera, essential thrombocythemia and primary myelofibrosis.
ASXL1; EZH2; JAK2; myelofibrosis; myeloproliferative neoplasms; TET2; thrombocythemia
Liver disease continues to represent a critical mediator of morbidity and mortality in those with human immunodeficiency virus (HIV) infection. The frequent presence and overlap of concomitant injurious processes, including hepatitis C virus and hepatitis B virus infections, hepatoxicity associated with antiretroviral therapeutic agents, alcohol, and other toxins, in the setting of immunosuppression lead to rapid fibrotic progression and early development of end-stage liver disease. This conference summary describes the proceedings of a state-of-the-art gathering of international experts designed to highlight the status of current research in epidemiology, natural history, pathogenesis, and treatment of HIV and liver disease.
New technologies are rapidly having a great impact on the development of novel rehabilitation interventions. One of the more popular of these technological advances is virtual reality. The wide range of applications of this technology, from immersive environments to tele-rehabilitation equipment and care, lends versatility to its use as a rehabilitation intervention. But increasing access to this technology requires that we further our understanding about its impact on a performer. The International Workshop on Virtual Reality in Rehabilitation (IWVR), now known as Virtual Rehabilitation 2007, is a conference that emerged from the need to discover how virtual reality could be applied to rehabilitation practice. Individuals from multiple disciplines concerned with the development, transmission, and evaluation of virtual reality as a technology applied to rehabilitation attend this meeting to share their work. In this special issue of the Journal of NeuroEngineering and Rehabilitation we are sharing some of the papers presented at the 2006 meeting of IWVR with the objective of offering a description of the state of the art in this research field. A perusal of these papers will provide a good cross-section of the emerging work in this area as well as inform the reader about new findings relevant to research and practice in rehabilitation.
To determine the quality of reporting in the proceedings of the All India Ophthalmological Conference
(AIOC) 2000, subsequent rate of publication in an indexed journal and differences between the proceedings
and the journal version of these papers.
Materials and Methods:
All papers presented at the AIOC 2000 were retrieved from the proceedings and
assessed for completeness of reporting. To determine the subsequent full publication, a Medline search
was performed as of January 2007; consistency between the proceedings paper and the final publication
was evaluated. Statistical analysis: Chi square and Fisher′s exact tests were used to compare publication
rates based on geographical location, subspecialty and study design; Student′s t-test was used to compare
differences based on the number of authors and sample size.
Two hundred papers were retrieved; many failed to include study dates, design or statistical methods
employed. Thirty-three (16.5%) papers were subsequently published in indexed journals by January 2007. The
published version differed from the proceedings paper in 27 (81.8%) instances, mostly relating to changes in
author name, number or sequence.
The overall quality of reporting of scientific papers in the proceedings of the AIOC 2000 was
inadequate and many did not result in publication in an indexed journal. Differences between the published
paper in journals and in proceedings were seen in several instances. Ophthalmologists should be cautious
about using the information provided in conference proceedings in their ophthalmic practice.
All India ophthalmological conference proceedings; indexed journal; ophthalmology; publication rates
The First Asia-Oceania Research Organisation on Genital Infections
and Neoplasia (AOGIN) Meeting was held in Kota Kinabalu, Malaysia,
in July 2005. The conference covered regional issues relating to
infection with the human papillomavirus—epidemiology, virology,
and immunology, testing, screening, and prevention strategies—as
well as cervical cancer screening and its management.
Optogenetics is a research field that uses gene therapy to deliver a gene encoding a light-activated protein to cells providing light-regulated control of targeted cell pathways. The technology is a popular tool in many fields of neuroscience, used to transiently switch cells on and off, for example, to map neural circuits. In inherited retinal degenerative diseases, where loss of vision results from the loss of photoreceptors, optogenetics can be applied to either augment the function of surviving photoreceptors or confer light sensitivity to naturally nonlight sensitive retinal cells, such as a bipolar cells. This can be achieved either by the light sensitive protein integrating with native internal signaling pathways, or by using a dual function membrane protein that integrates light signaling with an ion channel or pump activity. Exposing treated cells to light of the correct wavelength activates the protein, resulting in cellular depolarization or hyperpolarization that triggers neurological signaling to the visual cortex.
While there is a lot of interest in optogenetics as a pan-disease clinical treatment for end-stage application in the inherited degenerative diseases of the retina, research to date has been limited to nonhuman clinical studies. To address the clinical translational needs of this technology, the Foundation Fighting Blindness and Massachusetts Eye and Ear Infirmary cohosted an International Optogenetic Therapies for Vision Workshop, which was held at Massachusetts Eye and Ear Infirmary, Boston, Massachusetts on June 1, 2012.
optogenetics; vision; retina; gene therapy
The 2007 Summit on “Environmental Challenges to Reproductive Health and Fertility” convened scientists, health care professionals, community groups, political representatives and the media to hear presentations on the impact of environmental contaminants on reproductive health and fertility and to discuss opportunities to improve health through research, education, communication and policy. Environmental reproductive health focuses on exposures to environmental contaminants, particularly during critical periods of development, and their potential effects on future reproductive health, including conception, fertility, pregnancy, adolescent development and adult health. Approximately 87,000 chemical substances are registered for use in commerce in the US, with ubiquitous human exposures to environmental contaminants in air, water, food and consumer products. Exposures during critical windows of susceptibility may result in adverse effects with lifelong and even intergenerational health impacts. Effects can include impaired development and function of the reproductive tract and permanently altered gene expression, leading to metabolic and hormonal disorders, reduced fertility and fecundity and illnesses such as testicular, prostate, uterine and cervical cancers later in life. This executive summary reviews effects of pre- and post-natal exposures on male and female reproductive health and provides a series of recommendations for advancing the field in the areas of research, policy, health care and community action.
environmental contaminants; reproductive health; endocrine disrupting chemicals; fertility; fecundity; hormone disruption; sperm quality; reproductive tract development
The current, generally accepted approach to formulating health requirements for the international movement of embryos is to base them on the health status of the male and female donor animals. The alternative approach of basing them on the health status of the embryos themselves has been blocked by the lack of scientific information about the potential of the early embryo to transmit agents of infectious disease. Consequently, most research into infectious disease transmission by embryos has had the objective of assessing the potential of the embryo to transmit infectious disease, at the stage of development at which it is transferred commercially, with the thought in mind that, for some diseases, it may be possible in the future to focus on the embryo rather than the donor when drawing up health requirements for import permits. Results from experiments involving the bovine leukemia virus, bluetongue virus, infectious bovine rhinotracheitis virus, foot and mouth disease virus and Brucella abortus are encouraging to the point where, with the exception of foot and mouth disease virus, they could and should be put to the test in field studies. Research on several other bovine pathogens is underway, but the studies are not sufficiently advanced for a judgement to be made on the potential of embryos to transmit them. There is evidence that the research done is starting to have a positive effect through the relaxation of some health requirements for the international movement of embryos.
Embryo; embryo transfer; disease transmission; infectious agent; pathogen; international movement; health requirements
Out of 358000 maternal deaths that occurred globally in 2008, 57.8% occurred in continental Africa. Africa had a maternal mortality ratio of 590 compared to 14 in developed regions, 68 in Latin America and Caribbean, and 190 in Asia. This article reflects on the discussions held during the Fifteenth Assembly of the Heads of State and Government of the African Union on the reasons why the maternal mortality ratio is so high in Africa and what can be done to reduce it.
Methods employed included panel and open public discussions among the Heads of State and Government of the African Union. The article uses the WHO health systems strengthening framework, which consists of six pillars (information systems, leadership and governance, health workforce, financing, and medical products, vaccines and technologies, and health services) to describe the proceedings of the discussions.
The high maternal mortality ratios in countries were attributed to weak national health information systems; leadership and governance challenges related to poverty, health illiteracy, poor transport networks and communications infrastructure, risky cultural practices, armed conflicts and domestic violence, dearth of women empowerment; inadequate levels of skilled birth attendants; inadequate domestic and external funding; stock-outs of consumable inputs; and limited coverage of maternal and child health interventions.
In order to accelerate progress towards MDGs 4 and 5, the Heads of State and Government recommended that countries should make maternal deaths notifiable and institutionalize maternal death audits; develop, fund and implement policies and strategies geared at improving maternal, newborn and child health; accelerate inter-sectoral action to address the broad health determinants; increase the number of skilled birth attendants; fulfil commitment to allocate at least 15% of the national budget to the health sector and allocate adequate resources to prevent stock-outs of essential medicines and reproductive health commodities; leverage health promotion approaches to raise national awareness; and ensure that there is a health centre within a radius of four kilometres equipped to provide good quality integrated maternal, newborn and child health services.
There was consensus among the discussants that there was urgent need to speed up actions for strengthening health systems to improve coverage of maternal, newborn and child health services; and to address broad determinants of women, newborn and children’s health for sustained improvements in health and other development goals.