Dementia Dispatch July 2017

JULY NEWSLETTER

From the Director

The NNIDR sits at the juncture between government, research and the community. With initiatives delivered by NHMRC and services provided by Alzheimer’s Australia, the NNIDR is a novel and high potential strategic intervention. It is well positioned to deliver positive impact for people with dementia, their families and carers.

Now at its midway point in both term and funding distributed, projects to the value of $98.6 million have been approved for funding by the Federal Health Minister to implement this measure with a further $57 million allocated to four granting rounds in progress. As important is the work that the NNIDR’s excellent advisory groups have been doing to identify gaps in infrastructure and evidence for addressing over the coming two years. With funded projects now also reaching their mid-point there is the opportunity to gather up information on short term outcomes and consider the possible longer term benefits from our research investments.

Over the second half of the year, we will be reporting back to the Australian community on progress towards better care and cure to date.  Funded activities will be mapped against the Strategic Roadmap for Dementia Research and Translation, and we will tell the stories that will provide assurance that the funds for boosting dementia research have been well invested. Granularity in the detail and an outcomes and impact focus are needed if we are to reliably measure the success of the Initiative. The importance of identifying those impacts that have delivered substantive benefit, for example through mapping new levels of collaboration and partnership, or new capabilities introduced to the sector, cannot be over-stated.

The backdrop for this work is a national and international policy and funding landscape for medical research that is rapidly changing. In the last six months we have seen the first distributions from the Australian Medical Research Future Fund. We have also seen the announcement in the United Kingdom of the establishment of a joint MRC / Alzheimer’s Society / Alzheimer’s Research UK national institute which brings together world-leading expertise in biomedical, care, public health and translational dementia research. With an investment of £250m, UK DRI’s research will invigorate the therapeutic pipeline and drive new approaches to diagnosis, treatment, care provision and prevention. And in the US, NIH this year will prepare and submit to the President a budget proposal to effectively treat and prevent Alzheimer’s and related dementias by 2025. Only two other areas of biomedical research – cancer and HIV/AIDs – have been the subject of such special budget development aimed at speeding discovery. 

These are only some of the significant developments in the sector. On the policy front, two are noteworthy. The WHO Global Action Plan on the Public Health Response to Dementia 2017-2015 was adopted on May 29 by the 70th World Health Assembly and the Australian Health Ministers’ Advisory Council released its National Strategic Framework for Chronic Conditions. The Boosting Dementia Research Initiative has a clear role in delivering outcomes within both the Global Action Plan and the Framework.

These are exciting times, providing high potential for achieving NNIDR’s vision to target, co-ordinate and translate the strategic expansion of dementia research in Australia. We look forward to sharing our report card and hearing of your work at the Australian Dementia Forum 2017, to be held October 15 – 17 in Melbourne.

 

 

 

Australian Dementia Forum 2017: Call for Abstracts Now Open

This year’s Australian Dementia Forum will focus on progress in delivering the Boosting Dementia Research Initiative and takes place in Melbourne between 15 and 17 October 2017.  Timed to immediately precede Alzheimer’s Australia’s 17th biennial conference, Be the change, the Forum will bring together Australia’s dementia researchers who are working to address the challenge of Alzheimer’s disease and other dementias. The conference will provide fertile ground for accessing the latest research breakthroughs and exploring collaborations relevant to the NNIDR Strategic Roadmap for Dementia Research.

NNIDR is now calling for abstracts for oral presentations and posters. For full details of the Call: http://www.nnidrforum.com.au/call-for-abstracts.php

 This year also provides opportunities for Research Development Fellows to convene special interest groups to explore topics of mutual interest. Interested fellows should submit a proposal including a topic, a brief justification (no more than half a page) and nominate at least one senior researcher as a sponsor of the session. The sponsor’s role will be to assist in shaping the agenda for the discussion and suggest possible participants.  Details are available on the conference website call for abstracts, and proposals should be emailed to abstracts@nnidrforum.com.au.

Cognitive Decline Partnership Centre Awards New Funding for Implementation

NNIDR welcomes CDPC’s recent funding announcement, that will see the development of specifically designed and readily accessible information for people with dementia and their care partners, an education tool to raise awareness of the needs of families living with Younger Onset Dementia, and greater access to evidence-based data through open access publications.

Centre Director Professor Susan Kurrle says: “Now that so many of our projects are delivering real outcomes that have the potential to improve care for people with dementia it is important that we direct valuable resources to enable these findings to be translated into practice.”

To see more details about the funding allocation open this link for the full news release: CDPC Funding Announcement

NHMRC Public Consultation: “A Framework for NHMRC Assessment and Funding of Clinical Trials and Cohort Studies”

High quality clinical trials and cohort studies are the cornerstone of modern evidence-based decision making. Although they can be expensive to do well, they can lead to significant changes in policy or practice, improvements in health and wellbeing and cost savings to the health system. It is therefore critical that the framework applied to their assessment and funding by NHMRC is fit for purpose and supports efficient, relevant, high quality studies that will fill gaps in knowledge and produce meaningful, implementable findings.

A discussion paper has been prepared and is now available for consultation. The paper describes the challenges faced by NHMRC when funding clinical trials and cohort studies and proposes an assessment and funding framework for the future built around three key principles: the need for a strong rationale, the appropriateness of the design, and the achievement of milestones. The framework was developed by the NHMRC Working Group on Clinical Trials and Large Studies, a Joint Sub-Committee of Research Committee and the Health Translation Advisory Committee.  For the Consultation Paper and further details about the consultation process please visit the website.

NNIDR Fellow Dr Emily Reeve and team reach project milestone: Deprescribing Guideline

Congratulations are extended to our Research Development Fellow, Dr Emily Reeve, and her team for reaching a significant milestone in the development of their clinical practice guidelines.

The Evidence-Based Clinical Practice Guideline for Deprescribing Cholinesterase Inhibitors and Memantine in People with Dementia has been released for public consultation. The Guideline is proposed for submission to the NHMRC for consideration of approval under section 14A of the National Health and Medical Research Council Act 1992.

Emily’s Fellowship is hosted by the University of Sydney, NHMRC Partnership Centre for Dealing with Cognitive and Related Functional Decline in Older People. The Deprescribing Guidelines in the Elderly Project is a collaboration between the Partnership Centre and the Bruyère Research Institute, Canada.

Appropriate use of cholinesterase inhibitors and memantine involves both prescribing these medications to individuals who are likely to benefit, and deprescribing (withdrawing) them for individuals where the risks outweigh the benefits. The purpose of this guideline is to assist healthcare professionals to determine when it might be suitable to trial withdrawal of these medications for an individual and to guide how to conduct withdrawal.

All end-users, consumers and the public have been invited to make a submission to the guideline development team lead (Dr Emily Reeve) on the draft guidelines. 

A draft of the guideline and supporting documents are available from The University of Sydney website.

NHMRC-ARC Dementia Research Development Fellow Profile: Scott Ayton

NHMRC-ARC Dementia Research Development Fellow Dr. Scott Ayton is hosted by the Florey Institute of Neuroscience and Mental Health. Scott obtained his PhD in 2012 from the University of Melbourne, where he investigated iron neurochemistry in animal and cell models of Parkinson’s disease.

During his fellowship with Professor Ashley Bush, Scott has applied his knowledge in iron neurochemistry to investigate the impact of iron in Alzheimer’s disease in longitudinal clinical cohort studies: the Australian Imaging Biomarkers and Lifestyle study (AIBL; Australia), the Alzheimer’s Disease Neuroimaging Initiative (ADNI; USA) and the Memory and Aging Project (USA).

First, by using ferritin levels in the cerebrospinal fluid as a reporter of brain iron, Dr Ayton and colleagues demonstrated that in people at risk of dementia, those with high iron at baseline had poorer cognitive performance over the subsequent 7 years, and were more likely to develop dementia. More recently, Dr Ayton and colleagues in AIBL have shown using an MRI-based method for measuring iron - Quantitative Susceptibility Mapping – that in those with PET-confirmed β-amyloid pathology, high brain iron predicted more rapid clinical deterioration over 6 years.

These findings suggest that both fluid and imaging reporters of brain iron content could be used as prognostic biomarkers to predict the risk of cognitive decline. The data also suggest that lowering brain iron content with an iron chelator might slow cognitive decline – which will be tested in 2017 under a NHMRC-funded clinical trial. 

  • Ayton S, Fazlollahi A, Bourgeat P, Raniga P, Ng A, Lim YY, Diouf I, Farquharson S, Fripp J, Ames D, Doecke J, Desmond P, Ordidge R, Masters CL, Rowe CC, Maruff P, Villemagne VL, the Australian Imaging Biomarkers and Lifestyle (AIBL) Research Group, Salvado O, Bush AI. Cerebral quantitative susceptibility mapping predicts β-amyloid-related cognitive decline. Brain; doi: 10.1093/brain/awx137
  • Ayton S, Faux NG, Bush AI. Association of cerebrospinal fluid ferritin level with preclinical cognitive decline in APOE-ε4 carriers. JAMA Neurology. 2017; 74 (1): 122-125
  • Ayton S, Faux NG, Bush AI. Ferritin levels in the cerebrospinal fluid predict Alzheimer’s disease outcomes and are regulated by APOE. Nature Communications. 2015; 6: No. 6760; 10.1038/ncomms7760

Useful References

Dementia registries around the globe and their applications: A systematic review  K Krysinska, P Sachdev, J Breitner, M Kivipelto… - Alzheimer's & Dementia, 2017

Patient registries are valuable tools helping to address significant challenges in research, care, and policy. Registries, well embedded in many fields of medicine and public health, are relatively new in dementia. This systematic review presents the current situation in regards to dementia registries worldwide. 31 dementia registries are identified as operating on an international, national, or local level between 1986 and 2016. More than half of the registries aimed to conduct or facilitate research, including preclinical research registries and registries recruiting research volunteers. Other dementia registries collected epidemiological or quality of care data. Evidence is presented of practical and economic outcomes of registries for research, clinical practice and policy, and recommendations for future development are made. Global harmonization of recruitment methods and minimum data would facilitate international comparisons. Registries provide a positive return on investment; their establishment and maintenance require ongoing support by government, policy makers, research funding bodies, clinicians, and individuals with dementia and their caregivers.

Preventing Cognitive Decline and Dementia: A Way Forward  - A Report of the National Academies of Sciences Engineering Medicine Alan I. Leshner, Story Landis, Clare Stroud, and Autumn Downey, Editors   Committee on Preventing Dementia and Cognitive Impairment  Board on Health Sciences Policy, Health and Medicine Division.  National Academies Press USA 2017

This report examines the current state of the evidence on interventions for preventing cognitive decline and dementia and is intended to inform future efforts to develop public health strategies and messages, as well as to suggest future research priorities for improving the quality of the relevant knowledge base.  The report finds that evidence has not yet matured to the level that would support an assertive public health campaign aimed at widespread adoption of any such intervention. However the report does identify those interventions, supported by some evidence of benefit, that the committee believes should be discussed with members of the public who are actively seeking advice on steps they can take to maintain brain health as they age.

What Difference Does Patient and Public Involvement Make and What Are Its Pathways to Impact? Qualitative Study of Patients and Researchers from a Cohort of Randomised Clinical Trials   Louise Dudley,1Carrol Gamble,1Jennifer Preston,2Deborah Buck,1 The EPIC Patient Advisory Group,1,¶Bec Hanley,3Paula Williamson,1 and Bridget Young4,* Ruth Jepson, Academic Editor   PloS One V.10(6) 2015

Patient and public involvement (PPI) is advocated in clinical trials yet evidence on how to optimise its impact is limited. We explored researchers' and PPI contributors' accounts of the impact of PPI within trials and factors likely to influence its impact.

WHO Global Action Plan on the Public Health Response to Dementia 2017 – 2015

Adopted by the 70th World Health Assembly on May 29 the Global Action Plan on the Public Health Approach to Dementia aims to improve the lives of people living with dementia, their families and carers, while decreasing the impact of dementia by setting out seven global action areas, with measurable targets.  The seven areas are dementia awareness; risk reduction; diagnosis; care; treatment; support for care partners; and research.

National Strategic Framework for Chronic Conditions  Australian Health Ministers’ Advisory Council, 2017  Australian Government  Canberra

The National Strategic Framework for Chronic Conditions is the result of extensive collaboration between the Commonwealth, and all state and territory, governments under the Australian Health Ministers’ Advisory Council. It presents the agreed high level guidance that will allow Australian Governments to work towards the delivery of a more effective and coordinated national response to chronic conditions. COAG’s commitment is to improve the health and wellbeing of Australians, and to deliver a sustainable health system that is responsive to the increasing burden of chronic conditions in Australia.

Sabbaticals @ NHMRC

The National Health and Medical Research Council (NHMRC) is Australia’s leading expert body promoting the development and maintenance of public and individual health standards.

NHMRC brings together within a single national organisation the functions of research funding and development of advice. One of its strengths is that it draws upon the resources of all components of the health system, including governments, medical practitioners, nurses and allied health professionals, researchers, teaching and research institutions, public and private program managers, service administrators, community health organisations, social health researchers and consumers.

The NHMRC welcomes applications for sabbatical projects for interested members of the academic and research sector. 

Share your story 

If you have a story to share on dementia, whether its research or personal experience, please contact nnidr.admin@alzheimers.org.au or phone 02 6217 9172. Your story may be published in the next newsletter, or used as vignettes in Institute-related communication materials, or created into a feature story and pitched to the media.

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