Understanding the brain through large, multidisciplinary research initiatives (original) (raw)
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BMC Family Practice, 2021
Background: It may take 15 years or longer before research evidence is integrated into clinical practice. This evidence-to-practice gap has deleterious effects on patients as well as research and clinical processes. Bringing clinical knowledge into the research process, however, has the potential to close the evidence-to-practice gap. The NEU-ROTRANS-Project attempts to bring research and practice together by focusing on two groups that usually operate separately in their communities: general practitioners and neuroscientists. Although both groups focus on dementia as an area of work, they do so in different contexts and without opportunities to share their expertise. Finding new treatment pathways for patients with dementia will require an equal knowledge exchange among researchers and clinicians along with the integration of that knowledge into research processes, so that both groups will benefit from the expertise of the other. Methods: The NEUROTRANS-Project uses a qualitative, multi-stage research design to explore how neuroscientists and general practitioners (GPs) approach dementia. Using a grounded theory methodology, it analyzes semi-structured interviews, case vignettes, focus groups with GPs in Saxony-Anhalt, Germany, and informal conversations with, and observations of, neuroscientists from the German Center for Neurodegenerative Diseases in Magdeburg. Results: The NEUROTRANS-Project identified a clear division of labor between two highly specialized professional groups. Neuroscientists focus abstractly on nosology whereas general practitioners tend to patient care following a hermeneutic approach integrating the patients' perspective of illness. These different approaches to dementia create a barrier to constructive dialogue and the capacity of these groups to do research together with a common aim. Additionally, the broader system of research funding and health care within which the two groups operate reinforces their divide thereby limiting joint research capacity. Conclusions: Overcoming barriers to research collaboration between general practitioners and neuroscientists requires a shift in perspective in which both groups actively engage with the other's viewpoints to facilitate
Journal of Alzheimer's Disease Reports, 2020
Dementia, of which the most frequent form is Alzheimer's disease, is a chronic and terminal condition with multi-factorial causes and numerous consequences on a patient's life. Combining perspectives from different disciplines seems necessary for unraveling dementia's entangled issues. Current dementia management is a multidisciplinary effort; however, integrating different disciplines as a holistic treatment process is often hindered due to different responsibilities, various conceptual approaches, and distinctive research methods. With this paper, we raise some of the challenges that need to be addressed in order to initiate an interdisciplinary or even transdisciplinary research agenda. We also outline recommendations on how to integrate multiple disciplinary perspectives in dementia care and research. We see opportunities for young investigators to draw from different fields of research in dementia as their research focus is still developing. By establishing common objectives with investigators from other fields, we can pursue the goal of improving treatment and care as a team-meaning accomplishing different tasks but sharing a common purpose. It is necessary to address the communication between fields that limits the understanding of connections between cognitive symptoms, biological processes, treatment, lifestyle, and care giving in order to reach the aim of developing a holistic, person-centered, patient-first approach. Associating biomedical research to field experience from care professionals and the study of human science will promote a more independent, social, and sustainable lifestyle for people with dementia.
Journal of Neurodegenerative Disorders, 2020
Background: It is possible that about 30% of all dementia is preventable by addressing many of the modifiable health and lifestyle risks important for overall physical health. Currently, people in the pre-dementia or very early dementia stage who are referred to Memory Assessment Services (MAS) in the UK receive minimal, if any, support and/or intervention. They are typically referred back to primary care until the full syndrome of dementia emerges. This represents a lost opportunity to modify the trajectory of the condition, intervene with disease modifying therapies (DMTs) when available, and delay the onset of a full dementia syndrome. Objective: We aimed to develop a blueprint for a pragmatic 'Brain Health Clinic' (BHC) that can be implemented alongside, or in conjunction with, conventional MAS. Methods: Using modified consensus methods, an interdisciplinary task force of clinicians with experience in the diagnosis and care of people with cognitive impairment and dementia, met on several occasions to review existing evidence, share clinical experience, and propose a model for a pragmatic, 'real life' BHC, as an extension of, or embedded within, a current MAS. Results: The BHC is a systems-based, integrated care approach that uses existing resources, and can be developed by reconfiguring the way current MAS are provided. It can support people with early-stage cognitive impairment to remain well for longer, potentially changing outcomes. The practical, evidencebased and user-friendly blueprint is available as a free online tool (depicted in figures throughout this article). It sets out a vision for managing early-stage cognitive decline using a 'preempt-prevent' approach that maximizes brain health and quality of life for the person at risk and their families. It sets the stage for implementation of validated, clinically useful biomarker batteries and DMT to be introduced when available, fostering personalized cognitive healthcare. Conclusion: Adapting existing services to address neurodegenerative cognitive decline in the very earliest stages is a key intervention for secondary prevention of dementia.
Consensus Document on European Brain Research
European Journal of Neuroscience, 2011
Psychiatric and neurological diseases combined represent a considerable social and economic burden in Europe. A recent study conducted by the European Brain Council (EBC) quantified the 'cost and burden' of major brain diseases in Europe, amounting to €386bn per year. Considering that these costs will increase exponentially in the years to come due to ageing of the European population, it is necessary to act now in order to curb this increase and possibly reverse the trend. Thus, establishing a strong European platform supporting basic and clinical research in neuroscience is needed to confront the economic and social challenge posed by management of brain diseases in European countries. To setup a platform for discussion, EBC published in 2006 a Consensus Document on European Brain Research, describing needs and achievements of research in Europe and presenting proposals for future research programs. Since 2006, European research in neuroscience has advanced tremendously. The present document represents an update elaborated to reflect changes in research priorities and advances in brain research that have taken place since 2006. The same approach and format have been used here as in the previous version. Multinational and multidisciplinary teams have once again come together to express their views, not only on the current strengths in European research, but also on what needs to be done in priority, hoping that this update will inspire policy makers and stakeholders in directing funding for research in Europe.
From Neurodegeneration to Brain Health: An Integrated Approach
Journal of Alzheimer's disease : JAD, 2015
The term "brain health" integrates general health and well-being with cognitive fitness, in the context of an environment that includes the spectrum of positive and negative factors affecting the individual. Brain health incorporates the effects of neurodegeneration in an ecological sense and the effects of environment and health practices on brain function. It also provides a framework for understanding and maximizing cognitive function across the lifespan. Despite decades of research into the pathogenesis of neurodegenerative disorders, our understanding of how to treat them is relatively rudimentary. Unidimensional approaches, such as medication monotherapies, have generally produced negative results in treatment trials. New integrative paradigms that cut across the molecular and cellular level, to the individual and societal level may provide new approaches to understand and treat these disorders. This report on proceedings of a multi-disciplinary conference held in Cl...
BMC neurology, 2017
Increasing age is the biggest risk factor for dementia, of which Alzheimer's disease is the commonest cause. The pathological changes underpinning Alzheimer's disease are thought to develop at least a decade prior to the onset of symptoms. Molecular positron emission tomography and multi-modal magnetic resonance imaging allow key pathological processes underpinning cognitive impairment - including β-amyloid depostion, vascular disease, network breakdown and atrophy - to be assessed repeatedly and non-invasively. This enables potential determinants of dementia to be delineated earlier, and therefore opens a pre-symptomatic window where intervention may prevent the onset of cognitive symptoms. This paper outlines the clinical, cognitive and imaging protocol of…
An interdisciplinary response to contemporary concerns about brain death determination
Neurology, 2018
In response to a number of recent lawsuits related to brain death determination, the American Academy of Neurology Ethics, Law, and Humanities Committee convened a multisociety quality improvement summit in October 2016 to address, and potentially correct, aspects of brain death determination within the purview of medical practice that may have contributed to these lawsuits. This article, which has been endorsed by multiple societies that are stakeholders in brain death determination, summarizes the discussion at this summit, wherein we (1) reaffirmed the validity of determination of death by neurologic criteria and the use of the American Academy of Neurology practice guideline to determine brain death in adults; (2) discussed the development of systems to ensure that brain death determination is consistent and accurate; (3) reviewed strategies to respond to objections to determination of death by neurologic criteria; and (4) outlined goals to improve public trust in brain death de...
The Oxford Brain Health Clinic: Protocol and Research Database
medRxiv (Cold Spring Harbor Laboratory), 2022
Introduction: Despite major advances in the field of neuroscience over the last three decades, the quality of assessments available to patients with memory problems in later life has barely changed. At the same time, a large proportion of dementia biomarker research is conducted in selected research samples that often poorly reflect the demographics of the population of patients who present to memory clinics. The Oxford Brain Health Clinic (BHC) is a newly developed clinical assessment service with embedded research in which all patients are offered high quality clinical and research assessments, including MRI, as standard. Methods and analysis: Here we describe the BHC protocol, including aligning our MRI scans with those collected in the UK Biobank. We evaluate rates of research consent for the first 108 patients (data collection ongoing) and the ability of typical Psychiatry-led NHS memory-clinic patients to tolerate both clinical and research assessments. Ethics and dissemination: Our ethics and consenting process enables patients to choose the level of research participation that suits them. This generates high rates of consent, enabling us to populate a research database with high quality data that will be disseminated through a national platform (the Dementias Platform UK data portal).
Worldwide initiatives to advance brain research
Nature neuroscience, 2016
Free access provided by the Kavli Foundation Nature Neuroscience carries sole responsibility for all editorial content overarching administrative body is not needed. However, workshops and symposia including members of the different initiatives are, of course, very helpful to promote interaction. Efforts to address reproducibility, data availability and resource sharing. The neuroinformatics platform of HBP is critical in this respect, and its goal is to facilitate data availability and data sharing and to provide curated information to HBP and the neuroscience community.