Advisory Council April 2013 Meeting Presentations

04/29/2013

ADVISORY COUNCIL ON ALZHEIMER'S RESEARCH, CARE, AND SERVICES

Monday, April 29, 2013

 

Responding to the Dementia Challenge in England

Alistair Burns
National Clinical Director for Dementia

Dementia Timeline

  • National Dementia Strategy February 2009
  • Antipsychotics Report “Time for Action” November 2009
  • Public Accounts Committee January 2010
  • National Clinical Director (NCD) appointed February 2010
  • General Election May 2010
  • Prime Minister’s Challenge March 2012
  • Reorganisation of the NHS April 2013

Dementia

  • National Dementia Strategy: 17 objectives (February 2009)
  • Anti-psychotic Report - 11 recommendations (November 2009)
  • Public Accounts Committee – 10 conclusions (January 2010)

Covers of various reports available at dementiachallenge.dh.gov.uk, including

  • Living well with dementia: A National Dementia Strategy
  • The use of antipsychotic medication for people with dementia: Time for action
  • Improving Dementia Services in England -- an Interim Report
  • Dementia 2010: The economic burden of dementia and associated research funding in the United Kingdom
  • Dementia 2012: A national challenge
  • The Right Prescription: a call to action on the use of antipsychotic drugs for people with dementia
  • Handbook: using the Dementia Commissioning Pack
  • Using the Commissioning for Quality and Innovation (CQUIN) payment framework
  • The Operating Framework for the NHS in England 2012/13
  • Innovation Health and Welfare
  • Establishment of Memory Services -- Results of a survey of Primary Care Trusts, final figures 2011
  • The NHS Atlas of Variation in Healthcare: Reducing unwarranted variation to increase value and improve quality
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Cost of dementia compared to national economies The comparative societal costs of cancer, ischaemic heart disease, stroke and dementia in the United Kingdom Research spend

Photos associated with the Design Council website

Change attitudes/raise awareness

  • From: Lonely, isolated, people in care homes
  • To: Engaged & alive individuals actively involved in life

Advertisement for www.nhs.uk/dementia

Advertisement for nhs.uk/dementia

"Quality outcomes for peole with dementia: building on the work of the National Dementia Strategy"

  • Timely diagnosis and support in primary care
  • Dementia in the General Hospital
  • Dementia in Care homes
  • Reduction of antipsychotics
  • Support for carers
Publication cover

Outcomes for people with dementia

By 2014, all people living with dementia in England should be able to say
I was diagnosed in a timely way I understand, so I make good decisions and provide for future decision making I get the treatment and support which are best for my dementia, and my life
Those around me and looking after me are well supported I am treated with dignity and respect I know what I can do to help myself and who else can help me
I can enjoy life I feel part of a community and I’m inspired to give something back I am confident my end of life wishes will be respected. I can expect a good death

"Unlocking diagnosis: The key to improving the lives of people with dementia"

  • Timely diagnosis and support in primary care
  • Dementia in the General Hospital
  • Dementia in Care homes
  • Reduction of antipsychotics
  • Support for carers
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Rates of dementia diagnosis across the UK

alzheimers.org.uk/dementia map UK Map of Dementia Diagnosis

Dementia in Primary Care

  • Quality Outcomes Framework (QOF)
    • Number of people with dementia
    • Review every 15 months
    • Blood tests
    • Care plans for carers of people with dementia
  • Directed Enhanced Service (DES)
    • Case finding in people attending for a vascular risk check
    • In people with Learning Difficulties
    • In people with neurological conditions
    • ? People over age 75
  • Health Check

Advertisement

Free NHS Health Check Poster Advertisement Quote

Three Publications

  • Timely diagnosis and support in primary care
  • Dementia in the General Hospital
  • Dementia in Care homes
  • Reduction of antipsychotics
  • Support for carers
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Hospital Care in Dementia

Publication cover Dementia CQUIN: FAIR

Two Publications

  • Early diagnosis and intervention in primary care
  • Dementia in the General Hospital
  • Dementia in Care homes
  • Reduction of antipsychotics
  • Support for carers
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Antipsychotics in Dementia

  • Define the challenge
  • Get the evidence
  • Talk about it
  • Get political support
  • Come up with a solution
  • Measure the change
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National Audit of Antipsychotics in Dementia 2012

Line Chart

Other Medications Prescribed

Line Chart

Three Publications

  • Timely diagnosis and support in primary care
  • Dementia in the General Hospital
  • Dementia in Care homes
  • Reduction of antipsychotics
  • Support for carers
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Two Publications

  • Timely diagnosis and support in primary care
  • Dementia in the General Hospital
  • Dementia in Care homes
  • Reduction of antipsychotics
  • Support for carers
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Information

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Dementia Prevalence Calculator www.guidepoststrust.org.uk

Dementia Timeline

  • National Dementia Strategy February 2009
  • Antipsychotics Report “Time for Action” November 2009
  • Public Accounts Committee January 2010
  • National Clinical Director (NCD) appointed February 2010
  • General Election May 2010
  • Prime Minister’s Challenge March 2012
  • Reorganisation of the NHS April 2013

Two Publications

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Key Challenges

  • Improvements in health and care
  • Dementia friendly communities
  • Better research

The NHS in England Before the Reforms

Department of Health
10 strategic health authorities (SHAs)
152 primary care trusts (PCTs)
  Health services: NHS trusts and primary care services  

The NHS in England After the Reforms -- outcomes, commissioning, patients

Department of Health
NHS Commissioning Board
  23 commissioning supportive services   4 regional commissioning sectors
  27 local Commissioning Board offices  
212 clinical commissioning groups
  Health services: NHS trusts and primary care services  

Dementia

D   Diagnosis  
E   Early identification  
M   Management of symptoms  
E   Effective support for carers  
N   Non drug treatments  
T   Treatment of medical conditions  
I   Information  
A   At, and towards, end of life  

Responding to the Dementia Challenge in England

Providing the Evidence to Face the Canadian and Global Challenges of Dementia

Yves Joanette, PhD, FCAHS
Scientific Director, CIHR Institute of Aging
Executive Director, ICRSAD

Some Facts...

Canadians with Alzheimer's disease or a related dementia  
Now 500,000
Within a Generation     1,100,000  
Cost to Canadians for dementia care  
Now $15 billion
Within a Generation   $153 billion  
The time Canadians will be providing in informal care
Now   231 million hours  
Within a Generation 756 million hours
Rising Tide: The Impact of Dementia in Canada, ASC, 2010

Global Context

January 2012
NAPA (USA)
February 2012
JPND (Europe)
March
WHO
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Canada: 10 Provinces & 3 Territories, 13 Provincial Health Systems

Canada Map divided into Providences

Provincial Plans on Dementia

  • Quebec
    • « Meeting the Challenge of Alzheimer’s Disease and Related Disorders - A Vision Focused on the Individual, Humanism, and Excellence » – May, 2009.
  • Bristish-Columbia
    • « The Provincial Dementia Action Plan for British ColumBia - Priorities and Actions for Health System and Service Redesign » – April 2012
  • Ontario
    • « 10 by 20 : Ontario action plan for dementia » – 2010
  • Alberta
    • « Strategic directions in healthy aging and contiuning care in Alberta - Alzheimer disease and other dementias » – 2002
  • Manitoba
    • « A strategy for Alzheimer disease and related dementias in Manitoba » – 2002
  • Newfoundland and Labrador
    • « Provincial strategy fo Alzheimer disease and other dementias : a plan of action » – 2001

Canadian Institutes of Health Research

Puzzle Pieces: Top Row -- Health Systems and Policy Research, Circulatory and Respiratory Health, Aboriginal Peoples' Health, Cancer Research, Musculoskeletal Health and Arthritis; Middle Row: Nutrition, Metabolism and Diabetes; Neurosciences, Mental Health and Addiction; CIHR IRSC; Human Development, Child and Youth Health. Bottom Row: Population and Public Health, Genetics, Aging, Gender and Health, Infection and Immunity.

CIHR Expenditures 2009-2010

Pie Chart: Operating Expenditures ($55); Open Competitions ($540); CRC ($87); NCE ($29); CECR ($4); Strategic Initiatives ($268).

CIHR Strategic Investments Roadmap Signature Initiatives

Enhance Patient-Oriented Care and Improve Clinical Results through Scientific and Technological Innovations
  1. Patient-Oriented Research SUPPORT Units (SPOR)
  2. Personalized Medicine
  3. Community Based Primary Health-Care
  4. Pathways to Health Equity for Aboriginal Peoples
  5. International Collaborative Research Strategy for Alzheimer’s Disease
  6. Canadian Epigenetics, Environment and Health Research Consortium
  7. Inflammation in Chronic Disease
  8. Evidence Informed Health-Care
Support a High-Quality, Accessible and Sustainable Health-Care System
Reduce Health Inequities of Aboriginal Peoples and other Vulnerable Populations
Prepare For and Respond To Existing and Emerging Threats to Health
Promote Health and Reduce the Burden of Chronic Disease and Mental Illness
+ Canadian Longitudinal Study on Aging

Cognitive Impairment in Aging

  • Canadian Dementia Knowledge Translation Network
  • Cognitive Impairment in Aging partnership (20+ partners)
Website Screenshot

International Collaborative Research Strategy for Alzheimer's Disease

Emblem for the International Collaborative Research Strategy for Alzheimer's Disease

ICRSAD in a Nutshell...

The International Collaborative Research Strategy for Alzheimer’s Disease (ICRSAD)

  • Is one of CIHR’s Major Initiatives (RSI)
  • Covers Alzheimer’s Disease and related neurodegenerative disorders
  • Focuses on two complementary objectives:
    • Strengthen the Canadian innovative and collaborative research efforts on neurodegenerative diseases through the CCNA
    • Support international leadership and the insertion of Canadian research in international collaboration

ICRSAD -- The Concept

Strengthening Canadian Research on Neurodegenerative Diseases Affecting Cognition: Collaborating with Asia China NSFC; Collaborating with USA ADNI2; Collaborating with EU COEN - JPND

Global Opportunity

Bar Chart

International Component

  • Wellcome Trust Neurodegeneration Program
  • Team Grant: Alzheimer’s Disease (France-Quebec-Canada)
  • Centres of Excellence in Neurodegeneration
  • Canada-China Team Grants in Alzheimer’s Disease and Related Disorders
  • ADNI Canadian Program
    • Canadian ADNI Centers
    • ADNI Secondary and Methodological Analyses

Centres of Excellence in Neurodegeneration

Agency and Initiative Emblems

Centres of Excellence in Neurodegeneration

  • Standards for determining the vascular contribution to neurodegeneration
    Joanna Wardiaw (MRC), Martin Dichgans (DZNE), Eric Smith (CIHR)
  • Integrated approach to identify novel genes for frontotemporal lobar degeneration
    MarcCruts (VIB), Christian Haass (DZNE), Dieter Edbauer (DZNE)
  • Mitochondrial dysfunction and susceptibility to Parkinson's disease: New models of pathogenetic interactions
    Donato A. Di Monte (DZNE), David S. Park (CIHR), Fabio Blandini (MDS), Anthony H.V. Schapira (MRC)
  • Early synaptic plasticity and network dysfunction in transgenic (tg) rat models of Alzheimer's disease (AD)
    Michael Rowan (HRB/SFI), Claudio Cuello (CIHR), Martin Fuhrmann (DZNE)
  • Immune subtype in Parkinson disease
    Thomas Gasser (DZNE), Antonio P. Strafella (CIHR)
  • C. elegans models of mitochondrial deficiency in the nervous system
    Daniele Bano (DZNE), Siegfried Hekimi (CIHR), Mario de Bono (MRC)
  • The GENetic Frontotemporal Dementia Initiative (GENFI): a new multi-centre platform for the study of frontotemporal lobar degeneration
    Martin Rossor (MRC), Giovanni B. Frisoni (MDS), Torik Ayoubi (VIB), Mario Masellis (CIHR)
  • Identification of generic supressors of proteinopathies
    David Rubinsztein (MRC), Joerg Gsponer (CIHR)

JPND

EU Joint Programme Neurodegenerative Disease Research

4 May 2012

Canada has joined JPND as the first ever Third Country member. Israel joins as full member to bring total number of countries participating in JPND to 27.

At the twelfth JPND Management Board meeting on May 4th, 2012, two countries' applications for membership of JPND were accepted:

Israel becomes the 26th full member country of JPND, following the applications of Austria and Croatia earlier in 2012. Full membership of JPND is open to EU Member States and EU-Associated Countries.

In a first for JPND, Canada's application for Third Country membership of JPND was also accepted. Canada now participates in JPND according to the recently published JPND Policy on Third Country Participation.

This brings the total number of countries participating in JPND to 27.

JPND

EU Joint Programme Neurodegenerative Disease Research

JPND Governance Diagram

JPND

EU Joint Programme Neurodegenerative Disease Research

  • Improve the scientific understanding of the disease.
  • Improve the medical tools available to doctors to identify and treat the disease.
  • Improve the social care and structures available to assist patients, their families, and health service providers so that patients can receive optimum care at all stages of their illness.
  • To add value to national investments through coordinated action
  • To encourage the development of national research strategies in ND
  • To engage in partnership to reach the full potential of JPND

Implementation Plan

A first-phase JPND Implementation Plan has been agreed for the period of 2012-2014. The plan has three major action areas:

  • Annual Calls for Proposals
  • Action Groups to determine research needs and opportunities
  • Action Groups to promote engagement, commitment and partnerships

USA Conference

On November 9, 2012, at the headquarters of the American Association for the Advancement of Science (AAAS) in Washington, DC, a conference was held to explore the potential of enhanced transatlantic research collaboration in the area of neurodegenerative diseases. The conference was organized by JPND in close collaboration with the science counselors from the Embassies of France, Poland, Austria, Finland, Germany, Ireland, Italy, Spain, and Sweden, and the American Association for the Advancement of Science.

The aim of the conference was the showcase JPND and to attract the attention of potential American partners in order to achieve their possible future affiliation. The even was well attended, with approximately 40 participants from scientific institutes, universities, industry, NGOs, European embassies, and US government departments and agencies.

ICRSAD -- The Concept

Strengthening Canadian Research on Neurodegenerative Diseases Affecting Cognition, CCNA: Collaborating with Asia China NSFC; Collaborating with USA ADNI2; Collaborating with EU COEN - JPND

General Framework

Wave Chart

CCNA Framework

Wave Chart

CCNA -- Bringing Together Canadian Expertise

Organizational Chart: Theme Primary Prevention -- Teams 1-4; Theme Quality of Life -- Teams 1-3; Theme Secondary Prevention -- Teams 1-3.

CCNA -- The Vision

The vision of the CCNA is to bring together the best of Canadian research in the field of neurodegenerative diseases affecting cognition -- supported by CIHR as well as by other partners -- in a collaborative and synergistic space to work on bold, innovative and transformative research that will ultimately impact the quality of life and the quality of services for those having to live with the effects of neurodegenerative diseases affecting cognition and their caregivers

CCNA -- Characteristics

  • Excellent governance -- The Nominated Principal Applicant (NPA) and the three Theme Principal Applicants (PA) will together play a crucial role in creating a interactive research space, with the necessary common resources, where interdisciplinarity and distinct perspectives of various neurodegenerative diseases will lead to potential innovative solutions
Organizational Chart, Funding Partner's Forum: Theme PA Primary Prevention -- PA Team 1-2; Theme PA Secondary Prevention -- PA 3-5; Theme PA Quality of Life -- PA Team 6-7.
  • Excellent research teams within each of the three themes (Primary Prevention, Secondary Prevention and Quality of Life) -- Each of these teams will submit an innovative, out-of-the-box research program for five years meant to have a significant impact
Chart Picturing the Interaction between Themes

CCNA -- Qualifiers

  • CCNA will be
    • Comprehensive -- All three themes and cross-cutting topics (Ethics, KT and training)
    • Inclusive -- Canada’s excellence in this area of research; established and new investigators; knowledge users
    • Innovative -- Focus on out-of-the-box high-impact research
    • Connected globally -- In synergy with the best groups in the world

CCNA -- Partners

A unique role for CCNA Partners

  • Highly interested groups or organizations involved in the transformation of discoveries into impactful solutions
  • Partners will not only bring extra resources to the CCNA, but will also:
    • Contribute to the shaping of the research program (1st Partners’ Forum)
    • Represent a privileged source of transformation of discoveries into impactful measures
    • Be in constant synergy with the CCNA teams and leaders (Yearly Partners’ Forum)

Canadian Institues of Health Research

Screen shot for Canadian on Neurodegeneration in Aging (CCNA)

CCNA -- The Timeline

Timeline Chart: March 2013 CCNA EOI call; April 2013 Webinars (3) for applicants and stakeholders; May 2013 EOI Deadline; between May and August 2013 International review; August 2013 First Partners' Forum for applicants, partners and international experts; December 2013 Final CCNA application; 2014 International review; April 2014 Launch.

CCNA -- The Process

Process Chart: Phase I -- Expression of Interest; leads to Application Intake; leads to Relevance Review; leads to Review Meeting; leads to Dev. Funds; leads to Partners' Forum (Presentation by CCNA NPA, Theme PAs, Team PAs; Engagement with international experts and CCNA partners; Discussion of cross-cutting components); leads to Dev. Funds. Phase II -- CCNA Application (CCNA NPA) and Overall Proposal for 3 Themes (Theme PAs) and Research Project for each Team (Team PAs); leads to Full Application; leads to Review Meeting and/or Applicant Response; leads to Recommendation to CIHR.

Canada: A Node of Innovation in a Global Network

World Map

Discussion

Break

NAPA Federal Research Update

Richard J. Hodes, M.D.
Chair, Federal Research Subcommittee

Establishing Research Milestones and Tracking Progress

Timeline Chart: NAPA Plan Goal 1 Prevent and Effectively Treat AD by 2025; leads to Public Input through AD Research Summit 2012; leads to Milestones to Implement Summit Recommendations and Special Initiatives to Focus Research on Needs and Opportunities; leads to International AD Research Portfolio (IADRP) and Links to Publications to Assess and Track Progress; leads to Annual Progress Reports to Inform Plan Updates

Alzheimer's Disease Research Summit Recommendations

  • Session 1: Interdisciplinary Approach to Discovering and Validating the Next Generation of Therapeutic Targets for AD
  • Session 2: Challenges in Preclinical Therapy Development
  • Session 3: Whom to Treat, When to Treat, and What Outcomes to Measure
  • Session 4: Drug Repurposing and Combination Therapy
  • Session 5: Nonpharmacological Interventions
  • Session 6: New Models of Public Private Partnerships

Research Summit Recommendations

Alzheimer's Research Summit Recommendations May 2012

Recommendations related to Drug Trial Milestones

  • 3.A. Initiate treatment trials in asymptomatic, at-risk individuals using uniform biomarkers and cognitive outcomes informed by data from Alzheimer’s disease trials using patients with more advanced disease.
  • 3.B. Collect DNA and other biosamples from these studies to enable subsequent interrogation based on treatment response and predictors of decline in the groups receiving placebo.
  • 3.F. Develop treatments for patients with symptomatic Alzheimer’s disease and support proof of concept studies to validate novel targets for cognitive and neuropsychiatric symptoms across all disease stages.
  • 5.E. Develop standard outcome measures to enable data comparisons across studies. These include but are not limited to ecologically valid measures of real world function, quality of life, and physical and cognitive function.

Milestones to Implement Recommendations of the NIH 2012 AD Summit

  • Drug Development: Repurposing and Combinations
  • Drug Development: Currently Known Targets
  • Drug Development: Novel Targets
  • Development of Non-Pharmacological Interventions
  • Biomarkers of Disease Progression
  • Epidemiology
  • Research Resources
  • Partnerships to Accelerate AD Drug Development
  • Infrastructure
  • Study Recruitment and Participation

Milestone Chart Example

Screenshot Example of the Milestone Chart

Milestone Table Example

Screenshot Example of the Milestone Table

Drug Trials Search Example

Screenshot Example of the Drug Trials Search

International Alzheimer's Disease Research Portfolio -- Participating Funders

  Current Members     Recent Commitments  
  • US Federal Agencies -- NIH, CDC, HRSA, AHRQ, AoA, VA, DoD
  • Alzheimer’s Association
  • Alzheimer’s Drug Discovery Foundation
  • Alzheimer’s Research UK
  • Bright Focus
  • Alzheimer’s Society UK
  • Alzheimer’s Australia
  • Alzheimer’s Society Canada
Actively encouraging submissions from AD funders -- IADRP contacts: Nina Silverberg (silvebergn@mail.nih.gov), Charlene Liggins (ligginsc@mail.nih.gov) and Heather Snyder (hsnyder@alz.org)

International Alzheimer's Disease Research Portfolio -- Upcoming Coding and Validation Process

Timeline: Funding data will be categorized using an automated coding process (April-May); Coded data will be validated by participating funders (May-June); Coded data will be standardized/formatted across funders (June); New funding data will be uploaded to the IADRP website (July)

FY 2013 Alzheimer's Disease Request for Funding Announcements

RFAs   $s in 2013 -- up to  
Interdisciplinary Approach to Identification and Validation of Novel Therapeutic Targets for Alzheimer's Disease (R01)   $23 M
Alzheimer's Disease Therapeutics Program (U01) $1 M
Alzheimer's Disease Prevention Trials (R01) $45 M
Alzheimer's Disease Phase I Clinical Trials (R01) $4 M
  Total -- $73 M

New AD Research Findings -- FY 2013

  • Genetics of AD May Vary Among Different Populations: Risk of Late Onset AD in African Americans
  • The Monetary Costs of Dementia in the United States

Genetics of AD May Vary Among Different Populations: Risk of Late Onset AD in African Americans

  • African Americans have a higher incidence of late-onset AD than Caucasians.
  • Genome wide association study included 1968 African American AD cases and 3928 African American controls.
  • Genotypes with strongest association with risk of LOAD among African Americans were ABCA7 (odds ratio 1.8) and APOE (odds ratio 2.3).
  • Association with ABCA7 was 60 percent stronger among African Americans than among individuals of European ancestry.
  • Identification of disease associated variants helps identify targets for genetic testing, prevention, and treatment. A variety of detection, treatment and prevention strategies will be needed.

Reitz, C. et al. JAMA. 2013;309(14):1483-1492

The Monetary Costs of Dementia in the U.S.

New England Journal of Medicine, April 4, 2013
M. Hurd, P. Martorell, A. Delavande, K. Mullen, K. Langa

  • Used Health and Retirement Study (HRS)
  • Diagnosis of dementia in ADAMS sub study
    • Estimate of national prevalence: 14.7% in population 71 or older in 2010
  • HRS data on use and cost of health care services; amount and type of informal care
  • Adjusted for co-morbidities and demographics
    • Want cost attributable to dementia

Total (Population) Costs

  • In 2010
    • Actual spending: Paid health care services, nursing home, in home paid help etc.
    • $109 billion = $28,000 per year per individual
    • Adding in informal care: $159-$215 billion = $42,000-$56,000 per individual
  • In 2040
    • Sharply increased fraction of population in their late 80s or early 90s…Baby boom
    • Actual spending: $259 billion (in 2010$)
    • Adding in informal care: $379-$511 billion (in 2010$)

Down Syndrome Research Update

  • On April 16-17, 2013, the Advancing Treatments for Alzheimer’s Disease in Individuals with Down Syndrome meeting was held.
  • Over 40 leading researchers in these fields attended
  • Meeting summary and recommendations will be posted soon at: www.nia.nih.gov
  • Meeting sponsors included: Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Neurological Disorders and Stroke, and the National Institute on Aging, the Down Syndrome Research and Treatment Foundation and Research Down Syndrome

April 2013 Meeting Logo

April 2013 Meeting Logo

Facilitate Partnership for Open Innovation Engaging all Stakeholders

Overlapping Circles: #1 Build Predictive Models of AD-- Redefine how we share and analyze big data; #2 Systems-based, Data Driven, Quantitative Drug Development -- Quantitative and Systems Pharmacology approach as an organizing principle; #3 Precompetitive Clinical Validation of Novel Targets -- Expand the precompetitive space for target validation through phase II trials.

Alzheimer’s Disease-Related Dementias Workshop

May 1-2, 2013, Natcher Auditorium, NIH Campus, Bethesda, MD

  • NINDS, together with NIA, will host a workshop to solicit input and develop recommendations on research priorities and timelines for AD-Related dementias.
  • Outline of Workshop Topics:
    • FTD and AD-Related Tauopathies
    • Lewy Body Dementias
    • Vascular Contributions to AD-Related Dementias
    • Mixed Dementias
    • Clinically Important Diagnostic Challenges in Dementias
    • Health Disparities in AD-Related Dementias
  • The workshop will define the state of the science and identify the critical opportunities and barriers in each of the dementias, whether basic, translational, or clinical.
  • Register link

Discussion

Public Comments

Photos of Richard and Betty, April 2013

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