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Alzheimer's and Other Dementia Disorders - Organisations

home | | Alzheimer's and Other Dementia Disorders | Organisations

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Alzheimer Disease Research Center - University of Southern California (USC)
Alzheimer Disease Research Center - University of Southern California (USC)

The Alzheimer Disease Research Center at USC is supported by the National Institutes of Health to conduct research on memory problems and aging. Their studies include observational studies that follow participants over time while examining changes that may occur with age, and therapy studies such as exercise training, medications and vaccines. Our goals are to understand the biological changes that may precede worsening memory and to assess whether new treatments including drugs may be helpful in preventing memory or improving memory loss.

 

Organisation

Country: United States of America

Email: adrc@med.usc.edu

Call (323) 442 7600

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Alzheimer's Clinical Trials Consortium
Alzheimer's Clinical Trials Consortium

Alzheimer's Clinical Trials Consortium is a research consortium to provide an optimal infrastructure, utilizing centralized resources and shared expertise, to accelerate the development of effective interventions for Alzheimer’s disease and related disorders. ACTC has 35 Member Sites with expertise in ADRD clinical trials and are selected by leadership, agree to utilize Master Clinical Trial Agreement and single IRB, and receive infrastructure support for a portion of staff and Principle Investigator (PI) time.  The PI from each Member Site serves on the ACTC Steering Committee. Participating Sites are active in one or more ACTC projects.

 

Organisation

Country: United States of America

Email: waltersa@usc.edu

Call (1) 858-964-0616

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Alzheimer's Disease Biospecimen Resource (ADBR) - National Disease Research Interchange
Alzheimer's Disease Biospecimen Resource (ADBR) - National Disease Research Interchange

The ADBR program can tailor acquisition of both whole brain and other tissue samples to meet the specific needs of each research project. The ADBR can provide tissue types for a wide range of experimental needs. This includes:

  • Fixed tissue, frozen tissue, or fresh tissue shipped on ice in culture media with antibiotics
  • CNS and PNS structures – whole brain, brain tissue samples, spinal cord, dorsal root ganglia, peripheral nerves
  • Tissues from any body system
  • Samples from both AD/ADRD and non-diseased, control donors are available

NDRI’s Human Tissue and Organs for Research Resource (HTORR) Program was recently awarded an administrative supplemental grant from the National Institute on Aging (NIA) to support Alzheimer’s Disease and AD-related dementia (AD/ADRD) studies that require whole brain and other tissues for their experimental analysis.

 

Organisation

Address: Three Parkway 1601 Cherry Street, Suite 1700 Philadelphia, PA 19102

Country: United States of America

Email: info@ndriresource.org

Call +1 215-557-7361

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Alzheimer's Disease Research Centers (ADRCs) The National Institute on Aging (NIA)
Alzheimer's Disease Research Centers (ADRCs) The National Institute on Aging (NIA)

The National Institute on Aging (NIA) funds 33 Alzheimer's Disease Research Centers (ADRCs) at major medical institutions across the United States. Researchers at these Centers are working to translate research advances into improved diagnosis and care for people with Alzheimer's disease, as well as working to find a treatment or way to prevent Alzheimer's and other types of dementia. In addition, NIA funds four Exploratory ADRCs that are designed to expand and diversify research and education opportunities to new areas of the country, new populations, and new areas of science and approaches to research. For people and families affected by Alzheimer's disease and related dementias, the ADRCs offer:

  • Read and share this infographic to learn more about how clinical research might be right for you.
  • Help with obtaining diagnosis and medical management
  • Information about Alzheimer's and related dementias, services, and resources
  • Opportunities for volunteers to participate in clinical trials and studies and research registries
  • Support groups and other special programs for volunteers and their families

 

Organisation

Country: United States of America

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Alzheimer’s Disease Research Center - The University of Pittsburgh
Alzheimer’s Disease Research Center - The University of Pittsburgh

The University of Pittsburgh Alzheimer’s Disease Research Center (ADRC) is one of the nation’s leading research centers specializing in the diagnosis of Alzheimer’s disease and related disorders. The University of Pittsburgh Alzheimer’s Disease Research Center (ADRC) is a research centers specializing in the diagnosis of Alzheimer’s disease and related disorders. Through outpatient evaluations, participants and their families receive state-of-the-art diagnostic assessments and contribute to the scientific study of Alzheimer’s disease.

 

Organisation

Address: UPMC Montefiore, 4th floor, suite 421 200 Lothrop Street Pittsburgh, PA 15213

Country: United States of America

Call +1 412-692-2700

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Asian Cohort for Alzheimer’s Disease - University of Pennsylvania, School of Medicine
Asian Cohort for Alzheimer’s Disease - University of Pennsylvania, School of Medicine

The Asian Cohort for Alzheimer’s Disease (ACAD) is an international collaboration with the goal of compiling a robust sample size of Asian American and Canadian subjects for Alzheimer’s disease (AD) research. Making up 6% and 10% of the US and Canadian populations respectively, Asians are the fastest growing populations in both countries yet they are underrepresented in AD research. ACAD aims to address this gap by starting with a cohort of individuals of Chinese, Korean, and Vietnamese ancestry, and later extending to other major Asian populations in both countries. Enrollment in ACAD involves a demographic questionnaire, cognitive testing, and saliva and/or blood sample for genetic analysis. These data will be used to determine the impact of lifestyle and genetic factors on AD risk.

 

Organisation

Country: United States of America

Email: theacadstudy@gmail.com

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Boston University Alzheimer's Disease Research Center (BU ADRC)
Boston University Alzheimer's Disease Research Center (BU ADRC)

The Boston University Alzheimer's Disease Research Center (BU ADRC) is a National Institute on Aging Center focused on research aimed at reducing the human and economic costs of Alzheimer's disease through the advancement of knowledge. Established in 1996, the BU ADRC  is one of 38 ADR Centers in the US-funded by the National Institutes of Health to advance research on Alzheimer's disease and related dementias.

 

Organisation

Address: 73 E Concord St., Boston, MA 02118

Country: United States of America

Email: joinADC@bu.edu

Call +1 857-364-2140

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CReATe
CReATe

The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium will enroll patients with sporadic and familial forms of amyotrophic lateral sclerosis, frontotemporal dementia (FTD), primary lateral sclerosis (PLS), hereditary spastic paraplegia (HSP), and progressive muscular atrophy (PMA). The goals of the CReATe consortium are to advance therapeutic development for this group of neurodegenerative disorders through study of the relationship between clinical phenotype and underlying genotype, and also through the discovery and development of biomarkers.

 

Organisation

Country: United States of America

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Fingers Brain Health Institute
Fingers Brain Health Institute

Fingers Brain Health Institute non-profit foundation driven to advance research on healthy brain aging and the implementation of dementia prevention. Based on results from the ground-breaking FINGER (Finnish Geriatric Intervention Study to Prevent Cognitive Impairment and Disability) study, we take a novel approach to prevention, targeting the complex causes of dementia from a range of interdisciplinary perspectives. We incorporate multiple intervention strategies and tools in our solutions. We also drive towards implementing results at a rapid pace, while remaining dedicated to an effective, holistic, and global approach.

 

Organisation

Address: c/o Stockholms Sjukhem 102 26 Stockholm

Country: Sweden

Postal Address: Box 12230 Stockholm

Email: miia.kivipelto@fbhi.se

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Lewy Body Dementia Research Center of Excellence - Stanford University
Lewy Body Dementia Research Center of Excellence - Stanford University

The Lewy Body Dementia (LBD) Research Center of Excellence (RCOE) brings together researchers from across the country joined in the first-ever comprehensive network of research centers to conduct Lewy Body Dementia clinical trials, provide community outreach, and expand professional continuing medical education. Representing 24 of medicine’s most prestigious academic medical research centers, these Research Centers of Excellence will help to streamline and standardize LBD science while connecting patients and families with the latest opportunities to participate in LBD clinical trials.

 

Organisation

Address: 291 Campus Drive, Stanford, CA

Country: United States of America

Call +1 650-723-4000

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National Alzheimer's Coordinating Center (NACC)
National Alzheimer's Coordinating Center (NACC)

The National Alzheimer's Coordinating Center was established in 1999 by the National Institute on Aging/NIH to facilitate collaborative research. Using data collected from NIA-funded Alzheimer's Disease Research Centers (ADRCs) across the United States, NACC has developed and maintains a large relational database of standardized clinical and neuropathological research data. In partnership, NACC provides a valuable resource for both exploratory and explanatory Alzheimer's disease research. NACC is located in the Department of Epidemiology at the University of Washington in Seattle and funded by NIA/NIH cooperative grant U24 AG072122.

  • The Alzheimer's Disease Genetics Consortium (ADGC)
  • The National Centralized Repository for Alzheimer's Disease and Related Disorders (NCRAD)
  • The NIA Genetics of Alzheimer's Disease Data Storage Site (NIAGADS)

 

The ADRC program

The National Institute on Aging/NIH currently funds 37 ADRCs across the United States. The Centers work to translate research advances into improved diagnosis and care and find ways to treat and possibly prevent Alzheimer's disease and related dementias. Each has its own research focus and recruitment protocol. However, the Centers are all required to involve their entire clinic enrollment in the Uniform Data Set (UDS) study and submit these data to NACC. The Centers are organized in cores and components: 

  • Administrative
  • Clinical
  • Data Management & Statistics
  • Neuropathology
  • Outreach
  • Recruitment and Education
  • Biomarker
  • Research Education Component

 

Organisation

Address: 4311 11th Ave NE, Ste 300, Seattle, WA

Country: United States of America

Email: info@naccdata.org

Call +1 206-543-8637

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Stanford Alzheimer’s Disease Research Center
Stanford Alzheimer’s Disease Research Center

The Stanford Alzheimer’s Disease Research Center (ADRC) is part of a nationwide network of congressionally mandated Centers of Excellence supported by the National Institutes of Health. The Centers of Excellence programs help establish critical research infrastructure; foster collaboration; train researchers, physician scientists, and other professional staff; and provide shared resources through core facilities.  

The clinical and research focus of the Stanford ADRC includes both Alzheimer’s disease and the spectrum of Lewy body disorders, the two most common causes of neurodegeneration. We believe that research and patient care can be advanced by comparing and contrasting distinctive features of each. We follow volunteers with Alzheimer’s disease, dementia with Lewy bodies, Parkinson’s disease, and mild cognitive impairment, and we follow healthy older adults without cognitive impairment. Our outreach activities include Latinx and Asian communities in the Bay Area. Stanford ADRC partners include:

  • The National Alzheimer’s Coordinating Center
  • The National Centralized Repository for Alzheimer’s Disease and Related Dementias
  • The National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site
  • The Resource Centers for Minority Aging Research
  • The Alzheimer’s Clinical Trials Consortium
  • The Alzheimer’s Disease Cooperative Study
  • Stanford Medicine
  • The VA Palo Alto Health Care System
  • The Northern California and Northern Nevada chapter of the Alzheimer’s Association
  • The Pacific Udall Center
  • The Stanford Neurosciences Institute
  • The Stanford Lewy Body Dementia Research Center of Excellence

 

Organisation

Address: Stanford Alzheimer’s Disease Research Center 213 Quarry Road Palo Alto, CA 94305

Country: United States of America

Email: adrcstanford@stanford.edu

Call +1 650-721-2409

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The Arizona Alzheimer’s Consortium (AAC)
The Arizona Alzheimer’s Consortium (AAC)

The Arizona Alzheimer’s Consortium (AAC) is the nation’s leading model of statewide collaboration in Alzheimer’s disease research. Established in 1998, the Consortium capitalizes on its participating institutions’ complementary strengths in brain imaging computer science, genomics, the basic and cognitive neurosciences and clinical and neuropathology research to promote the scientific understanding and early detection of Alzheimer’s disease and find effective disease-stopping and prevention therapies. It also seeks to educate Arizona residents about Alzheimer’s disease, research progress in the state and the resources needed to help patients, families and professionals manage the disease.

The Consortium is determined to find effective treatments to halt the progression and prevent the onset of Alzheimer’s disease without losing a generation. The Arizona Alzheimer’s Consortium is an organization that includes the state-supported Arizona Alzheimer’s Research Center (AARC), the National Institute on Aging (NIA)-funded Arizona Disease Core Center (Arizona ADCC), and independently funded research programs. Its seven member institutions include:

  • Arizona State University
  • Barrow Neurological Institute
  • Mayo Clinic Arizona
  • Banner Sun Health Research Institute
  • Translational Genomics Research Institute (TGen)
  • University of Arizona
  • Banner Alzheimer’s Institute.

 

Organisation

Address: 4745 N. 7th St., Ste. 105 Phoenix, AZ 85014-3666

Country: United States of America

Email: David.Jerman@bannerhealth.com

Call +1 602-374-8033

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The Hazel Hawke Alzheimer's Research and Care Fund
The Hazel Hawke Alzheimer's Research and Care Fund

The Hazel Hawke Alzheimer’s Research and Care Fund is a fund to support dementia care research across Australia.

 

Organisation

Address: Endeavour House, Level 3, 2-10 Captain Cook Crescent Griffith ACT 2603

Country: Australia

Postal Address: PO Box 3021 Manuka ACT 2603

Email: foundation@dementia.org.au

Call (02) 4962 7010

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The McKnight Brain Research Foundation
The McKnight Brain Research Foundation

The McKnight Brain Research Foundation is a private foundation devoted exclusively to solving the mysteries of the aging brain and helping people achieve a lifetime of cognitive health.

 

Organisation

Country: United States of America

Postal Address: P.O. Box 620005 Orlando, FL 32862

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The National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD)
The National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD)

The National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD) provides biological samples. NCRAD’s catalogs of biospecimens include a limited data set from the NACC Uniform Data Set (UDS). In addition, the catalogs provide links to NIAGADS datasets for subjects with available genetic data.NCRAD is the NIA-designated biorepository for biospecimens from dementia-related studies. It banks a broad range of samples that can be requested by qualified investigators. These include:

  • DNA
  • RNA
  • Plasma
  • Serum
  • CSF
  • Brain tissue
  • Lymphoblastoid cell lines (LCLs)
  • Peripheral blood mononuclear cells (PBMCs)
  • Induced pluripotent stem cells (iPSCs)
  • Fibroblasts
  • Feces.

 

Organisation

Country: United States of America

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The Dementia Australia Dementia Research Foundation – Victoria
The Dementia Australia Dementia Research Foundation – Victoria

The Dementia Australia Dementia Research Foundation – Victoria was established in 2012 to distribute funds generously donated for the purpose of research. The funds are used to provide research grants to Australian based dementia researchers, with priority given to projects with potential benefits for the 97,000 Victorians living with dementia and their families and carers with the expectation to grow to 386,000 by 2050. The Foundation’s priority is to fund research that is likely to directly benefit people with dementia, their families and carers. Grants have therefore generally been awarded to projects investigating psychosocial and clinical aspects of dementia, rather than to projects based in the lab. In consultation with the Dementia Australia Vic Consumer Advisory Committee and others, the Foundation’s Board have set five priority research areas for our grants program.

  • The less common forms of dementia (including Frontotemporal dementia and Lewy body disease)
  • Assistive technologies to improve the quality of life of people with dementia and their families
  • Supporting families and carers
  • Improving care of hospitalised patients with dementia
  • Translational research (moving evidence into practice)

 

Organisation

Country: Australia

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The Dementia Australia Research Foundation
The Dementia Australia Research Foundation

The Dementia Australia Research Foundation (previously known as the Alzheimer's Australia Dementia Research Foundation) is the research arm of Dementia Australia. They fund researchers across all stages of their career but maintain a particular focus on supporting Australia’s talented new and early career dementia researchers. They believe science holds the key to ending dementia, so our annual Dementia Grants Program provides funding to support innovative Australian research to:

  • Better understand the causes of dementia
  • Develop strategies to reduce dementia risk and slow the progression of the disease
  • Provide accurate and timely diagnoses
  • Improve treatment and care options for people living with dementia
  • Find a cure

All funding for the Dementia Australia Research Foundation is donated by members of the public and by private and philanthropic organisations. Currently 85% of all funding received goes directly to the Dementia Grants Program, with the remainder used for the communication of research and for managing the grants program. The Dementia Australia Research Foundation administers the Hazel Hawke Alzheimer’s Research and Care Fund, which supports research into the best care practices for people with dementia. The highly competitive Dementia Grants Program provides at least $1 million in funding for project grants, travel grants, postdoctoral fellowships and postgraduate scholarships each year. Please explore our site to find out who our researchers are and some of our success stories.

 

Organisation

Address: Endeavour House, Level 3, 2-10 Captain Cook Crescent Griffith ACT 2603

Country: Australia

Postal Address: PO Box 3021 Manuka ACT 2603

Email: foundation@dementia.org.au

Call (02) 4962 7010

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UAB Exploratory Alzheimer’s Disease Research Center - University of Alabama at Birmingham
UAB Exploratory Alzheimer’s Disease Research Center - University of Alabama at Birmingham

The UAB Alzheimer's Disease Center is a research centre to overcome Alzheimer's disease and related disorders by conducting, fostering, and enabling research at UAB and through national collaborations, by providing the highest level of care to patients and families, and by educating both professionals and the public about aging, dementia, and brain health. The research is aimed at reducing Deep South disparities in Alzheimer’s disease

 

Organisation

Address: Sparks Center, SC 640, 1720 Seventh Avenue South Birmingham, AL 35294

Country: United States of America

Email: alz@uabmc.edu

Call +1 205-934-6307

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Wicking Dementia Research and Education Centre - University of Tasmania
Wicking Dementia Research and Education Centre - University of Tasmania

The Wicking Dementia Research and Education Centre is at the forefront of translational research and support for issues confronting people with dementia and their carers. Projects are being carried out in Tasmania and nationally, across research fields such as neuroscience, medicine, nursing, psychology and sociology, health, economics and policy.  The Wicking Dementia Research and Education Centre (WDREC) is unique in Australia as an integrated dementia centre that is active across a range of disciplines, seeking to improve the lives of people with dementia and their carers. The WDREC aims to:

  • Better understand the diseases affecting the brain that cause progressive decline in functioning affecting memory, problems solving skills, function and social behaviour
  • Develop evidence-based models of care provision for people with dementia and their carers
  • Explore the trajectory of brain and functional changes in ageing through dementia
  • Provide educational programs to build knowledge and understanding of dementia within the community

 

Organisation

Country: Australia

Postal Address: Private Bag 143, Hobart TAS 7001

Email: wicking.enquiries@utas.edu.au

Call +61 3 6226 6914

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Wisconsin Alzheimer’s Disease Research Center
Wisconsin Alzheimer’s Disease Research Center

The Wisconsin Alzheimer’s Disease Research Center supports researchers in their pursuit of answers that will lead to improved diagnosis and care for patients while, at the same time, focusing on the program’s long-term goal — finding a way to prevent and effectively treat Alzheimer’s disease.

 

Organisation

Address: 600 Highland Avenue MC 2420 Madison, Wisconsin 53792-2420

Country: United States of America

Email: adrc@medicine.wisc.edu

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World-Wide FINGERS
World-Wide FINGERS

World-Wide FINGERS is a global interdisciplinary network with a mission to share knowledge and experiences on trials for dementia prevention and risk reduction, harmonize data, and plan joint international initiatives for the prevention of cognitive impairment and dementia. World-Wide FINGERS is a unique network that brings together research teams from over 40 countries around the world. The network promotes international joint initiatives and a novel approach to clinical trials in an effort to identify strategies for prevention and risk reduction of cognitive impairment, dementia, and Alzheimer’s disease. Alongside being implementable and effective in a global setting, these strategies are also tailored to different geographical, cultural, and economic settings.

Through synergistic use of data from multiple countries, World-Wide FINGERS creates a unique opportunity for rapid knowledge dissemination and implementation world-wide. The clinical trials that are currently being conducted as part of World-Wide FINGERS include common methodological features, following the core principles of the original FINGER study: 

  • A focus on multidomain interventions (such as diet, exercise, cognitive training, control of vascular or metabolic risk factors, and/or social stimulation)
  • Delivery of the intervention through group and individual sessions
  • Tailoring of the intervention to individual needs
  • Randomisation of participants so that the results of the intervention can be compared with a control group
  • Prospective harmonisation of outcomes to allow for data pooling and large-scale multi-trial analysis  

Each trial is tailored to the needs of the participants in the specific country, according to local habits, resources, and other cultural factors. Our aim is to harmonize both outcomes and interventions, and to eventually have a biorepository to also harmonize the collection of, for example, fluid biomarkers.The clinical trials within the World-Wide FINGER network are currently at different stages of implementation and alignment to the original FINGER study. Each trial falls within a specific level based on its current status.

 

Organisation

Email: miia.kivipelto@ki.se

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