E-infrastructures fostering multi-centre collaborative research into the intensive care management of patients with brain injury

Clinical research is becoming ever more collaborative with multi-centre trials now a common practice. With this in mind, never has it been more important to have secure access to data and, in so doing, tackle the challenges of inter-organisational data access and usage. This is especially the case for research conducted within the brain injury domain due to the complicated multi-trauma nature of the disease with its associated complex collation of time-series data of varying resolution and quality. It is now widely accepted that advances in treatment within this group of patients will only be delivered if the technical infrastructures underpinning the collection and validation of multi-centre research data for clinical trials is improved. In recognition of this need, IT-based multi-centre e-Infrastructures such as the Brain Monitoring with Information Technology group (BrainIT - www.brainit.org) and Cooperative Study on Brain Injury Depolarisations (COSBID - www.cosbid.de) have been formed. A serious impediment to the effective implementation of these networks is access to the know-how and experience needed to install, deploy and manage security-oriented middleware systems that provide secure access to distributed hospital based datasets and especially the linkage of these data sets across sites. The recently funded EU framework VII ICT project Advanced Arterial Hypotension Adverse Event prediction through a Novel Bayesian Neural Network (AVERT-IT) is focused upon tackling these challenges. This chapter describes the problems inherent to data collection within the brain injury medical domain, the current IT-based solutions designed to address these problems and how they perform in practice. We outline how the authors have collaborated towards developing Grid solutions to address the major technical issues. Towards this end we describe a prototype solution which ultimately formed the basis for the AVERT-IT project. We describe the design of the underlying Grid infrastructure for AVERT-IT and how it will be used to produce novel approaches to data collection, data validation and clinical trial design is also presented

The management and outcome for patients with chronic subdural hematoma: a prospective, multicenter, observational cohort study in the United Kingdom

Symptomatic chronic subdural hematoma (CSDH) will become an increasingly common presentation in neurosurgical practice as the population ages, but quality evidence is still lacking to guide the optimal management for these patients. The British Neurosurgical Trainee Research Collaborative (BNTRC) was established by neurosurgical trainees in 2012 to improve research by combining the efforts of trainees in each of the United Kingdom (UK) and Ireland's neurosurgical units (NSUs). The authors present the first study by the BNTRC that describes current management and outcomes for patients with CSDH throughout the UK and Ireland. This provides a resource both for current clinical practice and future clinical research on CSDH

The FaceBase Consortium: A comprehensive program to facilitate craniofacial research

The FaceBase Consortium consists of ten interlinked research and technology projects whose goal is to generate craniofacial research data and technology for use by the research community through a central data management and integrated bioinformatics hub. Funded by the National Institute of Dental and Craniofacial Research (NIDCR) and currently focused on studying the development of the middle region of the face, the Consortium will produce comprehensive datasets of global gene expression patterns, regulatory elements and sequencing; will generate anatomical and molecular atlases; will provide human normative facial data and other phenotypes; conduct follow up studies of a completed genome-wide association study; generate independent data on the genetics of craniofacial development, build repositories of animal models and of human samples and data for community access and analysis; and will develop software tools and animal models for analyzing and functionally testing and integrating these data. The FaceBase website (http://www.facebase.org) will serve as a web home for these efforts, providing interactive tools for exploring these datasets, together with discussion forums and other services to support and foster collaboration within the craniofacial research community

Essential Elements for Assessment of Persons with Severe Neurological Impairments for Computer Access Using Assistive Technology Devices: A Delphi Study

This study was undertaken with the intention of determining potential elements for inclusion in an assessment of persons with disabilities for access to computers utilizing assistive technology (AT). There is currently a lack of guidelines regarding areas that constitute a comprehensive and valid measure of a person’s need for AT devices to enable computer access, resulting in substandard services. A list of criteria for elements that should be incorporated into an instrument for determining AT for computer access was compiled from a literature review in the areas of neuroscience, rehabilitation, and education; and a Delphi study using an electronic survey form that was e-mailed to a panel of experts in the field of AT. The initial Delphi survey contained 22 categories (54 subcategories) and elicited 33 responses. The second round of the survey completed the Delphi process resulting in a consensus by the panel of experts for inclusion of 39 subcategories or elements that could be utilized in an assessment instrument. Only those areas rated as essential to the assessment process (very important or important by 80% of the respondents) were chosen as important criteria for an assessment instrument. Many of the non-selected elements were near significance, were studied in the literature, or were given favorable comments by the expert panelists. Other areas may be redundant or could be subsumed under another category. There are inherent obstacles to prescribing the proper AT device to assist disabled persons with computer access due to the complexity of their conditions. There are numerous technological devices to aid persons in accomplishing diverse tasks. This study reveals the complexity of the assessment process, especially in persons with severe disabilities associated with neurological conditions. An assessment instrument should be broad ranging considering the multidimensional nature of AT prescription for computer access. Both intrinsic and extrinsic factors affect the provision of AT

National, clinical cohort study of late effects among survivors of acute lymphoblastic leukaemia:The ALL-STAR study protocol

Introduction More than 90% of patients diagnosed with childhood acute lymphoblastic leukaemia (ALL) today will survive. However, half of the survivors are expected to experience therapy-related chronic or late occurring adverse effects, reducing quality of life. Insight into underlying risk trajectories is warranted. The aim of this study is to establish a Nordic, national childhood ALL survivor cohort, to be investigated for the total somatic and psychosocial treatment-related burden as well as associated risk factors, allowing subsequent linkage to nation-wide public health registers.Methods and analysis This population-based observational cohort study includes clinical follow-up of a retrospective childhood ALL survivor cohort (n=475), treated according to a common Nordic ALL protocol during 2008–2018 in Denmark. The study includes matched controls. Primary endpoints are the cumulative incidence and cumulative burden of 197 health conditions, assessed through self-report and proxy-report questionnaires, medical chart validation, and clinical examinations. Secondary endpoints include organ-specific outcome, including cardiovascular and pulmonary function, physical performance, neuropathy, metabolic disturbances, hepatic and pancreatic function, bone health, oral and dental health, kidney function, puberty and fertility, fatigue, and psychosocial outcome. Therapy exposure, acute toxicities, and host genome variants are explored as risk factors.Ethics and dissemination The study is approved by the Regional Ethics Committee for the Capital Region in Denmark (H-18035090/H-20006359) and by the Danish Data Protection Agency (VD-2018–519). Results will be published in peer-reviewed journals and are expected to guide interventions that will ameliorate the burden of therapy without compromising the chance of cure

Birth defects surveillance : a manual for programme managers

Second edition.Congenital anomalies, also known as birth defects, are structural or functional abnormalities, including metabolic disorders, which are present at birth. Congenital anomalies are a diverse group of disorders of prenatal origin, which can be caused by single-gene defects, chromosomal disorders, multifactorial inheritance, environmental teratogens or micronutrient malnutrition.This manual is intended to serve as a tool for the development, implementation and ongoing improvement of a congenital anomalies surveillance programme, particularly for countries with limited resources. The focus of the manual is on population-based and hospital-based surveillance programmes. Some countries might not find it feasible to begin with the development of a population-based programme. Therefore, the manual covers the methodology needed for the development of both population-based and hospital-based surveillance programmes. Further, although many births in predominantly low- and middle-income countries (LMICs) occur outside of hospitals, some countries with limited resources might choose to start with a hospital-based surveillance programme and expand it later into one that is population-based. Any country wishing to expand its current hospital-based programme into a population-based programme, or to begin the initial development of a population-based system, should find this manual helpful in reaching its goal.This manual provides selected examples of congenital anomalies (see Appendix A). These anomalies are severe enough that many would probably be captured during the first few days following birth. While a number of the anomalies listed are external and easily identified by physical exam, others are internal and typically require more advanced diagnostic evaluations such as imaging. However, because of their severity and frequency, all these selected conditions have significant public health impact, and for some there is a potential for primary prevention. Nevertheless, these are just suggestions; countries might choose to monitor a subset of these conditions or add other congenital anomalies to meet their needs.WHO thanks the United States Centers for Disease Control and Prevention, especially the National Center on Birth Defects and Developmental Disabilities, for providing financial support for the publication of this manual as part of the cooperative agreement 5 E11 DP002196, Global prevention of noncommunicable diseases and promotion of health. Supported in part by contract from Task Force for Global Health to the International Center on Birth Defects (ICBD) of the ICBDSR. We gratefully acknowledge and thank the United States Agency for International Development for providing financial support for this work.Suggested citation. Birth defects surveillance: a manual for programme managers, second edition. Geneva: World Health Organization; 2020. Licence: CC BY-NC-SA 3.0 IGO.9789240015395 (\u200eelectronic version)\u200e9789240015401 (\u200eprint version)\u200eBirth-Defects-Surveillance-A-Manual-for-Programme-Managers-2020Manual-P.pdfAcknowledgements -- Financial support -- Abbreviations -- Objectives of the manual -- 1. Surveillance of congenital anomalies -- 2. Planning activities and tools -- 3. Approaches to surveillance -- 4. Dianosing congenital anomalies -- 5. Congenital infectious syndromes -- 6. Coding and diagnosis -- 7. Primer on data quality in birth defects surveillance.2020cooperative agreement 5 E11 DP002196891