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http://crahw.anu.edu.au/files/English_long.pdf

Assessment questionnaire used as a screening test for dementia that is filled out by a relative or other supporter who knows the patient for a minimum of 10 years to determine whether that person has declined in cognitive functioning. It lists 26 everyday situations where a person has to use their memory or intelligence. The questions on the test compare the patient''s state of mind to 10 years ago using the scale of: Much Improved A Bit Improved Not Much Change A Bit Change A Bit Worse and Much Worse. If the person is found to have significant cognitive decline, then this needs to be followed up with a medical examination to determine whether dementia is present. Scoring: * 0-3 No Cognitive Impairment * >3 Cognitive Impairment

Proper citation: Informant Questionnaire on Cognitive Decline in the Elderly (RRID:SCR_003680) Copy   

•   Source: SciCrunch Registry

http://ki-su-arc.se/dementia-in-swedish-twins-harmony/

A twin study characterizing the importance of genetic factors for dementia and using discordant twin pairs to study other putative risk factors which control for genetic propensity to develop the disease. Molecular genetic studies have identified a number of mutations and other markers associated with early age of onset Alzheimer''''s disease. However, most cases of late age of onset dementia are considered sporadic, that is, without a clear genetic basis. Twin studies provide a unique opportunity to characterize the importance of genetic factors for dementia. Discordant twin pairs additionally provide the opportunity to study other putative risk factors which controlling for genetic propensity to develop the disease. In the first wave of the Study of Dementia in Swedish Twins, all SATSA twins born before 1935 have been screened for dementia symptoms. Over 190 suspects have been identified. This pilot study has been expanded to the entire registry in the study known as HARMONY. All twins aged 65 and older were invited to participate in a computer assisted telephone screening interview. A total of 13,519 individuals completed the interview (response rate = 75.9%). Dementia screening was based on the TELE, which includes the 10-item MSQ, other cognitive items (counting backwards, recalling three words, and similarities), and questions about health and daily functioning; or on Blessed scores obtained from a proxy interview. Among those screened, 1565 were positive for suspicion of dementia and were referred for complete clinical evaluation by a physician and a nurse. Once the preliminary in-person evaluation suggested that the suspected case was demented, the twin partner was also invited for an identical clinical work-up. Response rate for clinical evaluations is 71.4%. Approximately half of those visited for evaluation have been diagnosed as demented according to DSM-IV criteria, of which two-thirds have Alzheimer''''s disease. An extensive assessment of probable risk exposure is also included. Longitudinal follow-up is yet another feature of the study. Association studies with candidate genes are also being performed. Types of samples * DNA Number of sample donors * 1154 (sample collection completed)

Proper citation: KI Biobank - HARMONY (RRID:SCR_008884) Copy   

•   Source: SciCrunch Registry

http://www.ohsu.edu/xd/research/centers-institutes/neurology/alzheimers/research/data-tissue/biomarkers-genetics.cfm

A center that works with the Oregon Alzheimer's Disease Center's Data Core, and collects and stores tissue samples, family history and genotype data of various populations. These include samples and data from subjects from the following sources: OADC clinical studies, the Oregon Brain Aging Study, the Community Brain Donor Program, the Preventing Cognitive Decline with Alternative Therapies program (informally called the Dementia Prevention Study or DPS), the African American Dementia and Aging Project, and the Klamath Exceptional Aging Project. The collected data samples include genomic DNA, lymphoblast cell lines, genome-wide and candidate region SNP marker data, APOE, AD candidate gene markers.

Proper citation: Layton Center Biomarkers and Genetics (RRID:SCR_008824) Copy   

•   Source: SciCrunch Registry

http://www.VJDementia.com

Open access online video resource about dementia for researchers dedicated to bringing latest news and education in short form video format. Published by Oxford based Magdalen Medical Publishing.

Proper citation: Video Journal of Dementias (RRID:SCR_018382) Copy   

•   Source: SciCrunch Registry

http://www.siumed.edu/alz/research%20Dementia.html

A brain autopsy program developed to serve the needs of Illinois families and individuals affected by dementing diseases and to advance dementia research by providing tissue to researchers studying dementing diseases. The SIU School of Medicine (SIU-SM) Dementia Brain Autopsy Program facilitates the postmortem process for families wishing to obtain an autopsy for a loved one. A brain autopsy provides family members with accurate information regarding the exact nature of their relative's dementia. This includes information about the possibility of an inherited disorder which may affect other family members. The brain autopsy also helps clinicians improve their clinical skills by identifying the precise cause of the clinical dementia.

Proper citation: SIU CADRD Dementia Brain Autopsy Program (RRID:SCR_006918) Copy   

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http://www.brain.northwestern.edu/research/for-researchers/index.html

Tissue bank for collecting, cataloging and storing postmortem brain tissue samples from subjects with and without neurological disorders. Specimens are available for research on cognitive impairment, Alzheimer's, dementia and other disorders along with clinical data such as demographic information, health and family history and neuropsychological test scores. The bank provides services to distribute postmortem brain tissue and other samples to investigators for use in research that will provide qualitative and quantitative diagnostic information to physicians, families, and researchers.

Proper citation: Northwestern CNADC Tissue Bank / Neuropathology Core (RRID:SCR_013178) Copy   

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http://www.siumed.edu/alz/index.html

Resource center that provides assistance for patients and families affected by Alzheimer's disease and related conditions. The Center provides patient care through the Memory and Aging Clinic as well as through research, education and service to the community. Additionally the Center provides training in dementia care, maintains centralized data collection, and sponsors programs of research that qualify for federal financial participation.

Proper citation: SIU Center for Alzheimer's Disease and Related Disorders (RRID:SCR_013199) Copy   

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http://www.adrc.pitt.edu/

A research center associated with the University of Pittsburgh that specializes in the diagnosis of Alzheimer's disease and related disorders. The overall objective of the ADRC is to study the pathophysiology of Alzheimer's disease, with the aim of improving the reliability of diagnosis of Alzheimer's and developing effective treatment strategies. Current research foci emphasize neuropsychiatry and neuropsychology, molecular genetics and epidemiology, basic neuroscience, and structural and functional imaging that aid in the diagnosis and treatment of Alzheimer's disease. Specific services at the ADRC include: comprehensive diagnostic evaluation of patients with suspected Alzheimer's disease and other forms of dementia; evaluation of memory, language, judgment, and other cognitive abilities; and education and counseling for patients and families.

Proper citation: University of Pittsburgh Alzheimer Disease Research Center (RRID:SCR_008084) Copy   

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http://www.alzresearch.org/index.cfm

A Alzheimer's Disease Research Center (ADRC) whose goal is to conduct basic and clinical research aimed at understanding Alzheimer's disease. The Center enrolls a variety of individuals for clinical trials, evaluation and follow-up, including: normal control subjects, individuals with mild memory problems, and patients diagnosed with Alzheimer's Disease or related dementias. Researchers can request data and specimens obtained from ADRC subjects. These include blood or DNA, brain specimens, and cross-sectional or longitudinal clinical and cognitive data, all from ADRC subjects.

Proper citation: Johns Hopkins Alzheimer's Disease Research Center (RRID:SCR_008757) Copy   

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http://mayoresearch.mayo.edu/mayo/research/dickson_lab/

A brain bank and laboratory focused on memory and motor disorders. Brains are sent to the laboratory for diagnosis and research for the State of Florida Alzheimer Disease Initiative and for the Society for Progressive Supranuclear Palsy. As part of this brain banking function, fixed and frozen brain samples are obtained at autopsy and sent to the laboratory for diagnostic evaluation and for various types of research studies. The major types of analyses performed on the brain samples include neuro-histology, immunohistochemistry, confocal microscopy, electron microscopy and image analysis, as well as immunoassays. The latter are based upon Western blotting and enzyme linked immunoassays. The laboratory has a specific interest in the interface between normal aging and Alzheimer's disease, as well as in non-Alzheimer's degenerative disorders such as Lewy body dementia, corticobasal degeneration, progressive supranuclear palsy and frontotemporal dementia. The primary focus of research on aging is neuropathologic characterization of brains of individuals who had been prospectively and longitudinally evaluated during life. These studies aim to determine differences in a range of biologic parameters in brains of people with normal cognitive, mild cognitive impairment and dementia. Their focus on Parkinson's disease is to identify preclinical Parkinson's disease in order to develop means for early diagnosis.

Proper citation: Mayo Clinic Jacksonville: Neuropathology and Microscopy (RRID:SCR_008753) Copy   

•   Source: SciCrunch Registry

http://alzheimers.med.umich.edu/research/resources-for-investigators/

An organization that provides scientists with human tissue from Alzheimer's patients and patients with related brain disorders. Brain tissue is collected from research studies at the University of Michigan, as well as other research centers, and are donated by the families of the patients or the participants themselves. Tissues that are present in the Brain Bank are pre-characterized by pathologists and can be provided to researchers upon request.

Proper citation: Michigan Alzheimer's Disease Center Brain Bank (RRID:SCR_008774) Copy   

•   Source: SciCrunch Registry

http://www.neuro-center.com/

THIS RESOURCE IS NO LONGER IN SERVICE, documented on July 08, 2014. A multi-disciplinary institute providing specialized diagnostic evaluations, innovative treatments, education and research. It provides a collaborative, team-centered approach to provide innovative diagnostics to assist in developing cutting-edge brain based interventions and treatment strategies to best serve their patient's individual needs. Comprehensive Neuroscience Center is dedicated to working with children and adults who demonstrate neurodevelopmental disorders such as Autism Spectrum Disorders, Attention Deficits Hyperactivity Disorder, Learning Disabilities and Language-based deficits, as well as other neurological-based disorders including Traumatic brain injury, Disorders of Consciousness, Disorders of Aging, Alzheimer's and Dementia.

Proper citation: Comprehensive Neuroscience Center (RRID:SCR_008705) Copy   

•   Source: SciCrunch Registry

https://www.musc.edu/website/research/brainbank/braindonor.html

A brain bank and biospecimen repository that provides research materials to clinicians, scientists and pathologists in South Carolina. The bank provides both control and diseased biospecimens and brain tissue needed for research in Alzheimer's disease, Parkinson's disease and other related neurological disorders. The Campbell Laboratory coordinates the brain tissue donation program, provides post-mortem confirmation of a patient having neurological disorders, and leads research trials. Any South Carolina resident can choose to sign up as a tissue donor and have their brain tissue donated post-mortem to be used for neurological disorder research. The tissue bank will process and analyze these tissue samples and send the results to the deceased person's family.

Proper citation: MUSC Center on Aging Campbell Neuropathology Laboratory (RRID:SCR_008826) Copy   

•   Source: SciCrunch Registry

http://www.brainnet-europe.org/

THIS RESOURCE IS NO LONGER IN SERVICE.Documented on July 7, 2022. Consortium of 19 brain banks across Europe with an aim to harmonize neuropathological diagnostic criteria and develop gold standards for quality, safety and ethics standards for brain banking. BrainNet Europe also contributes to research on rare diseases, such as: Pick''s disease or other rare forms of dementia, as well as to questions after the events in the aging brain. Anyone can be a donor - irrespective of disease of the central nervous system or not, because for research purposes, one does not only need tissue samples from ill donors, but also from healthy ones for comparison.

Proper citation: BrainNet Europe (RRID:SCR_004461) Copy   

•   Source: SciCrunch Registry

https://adrc.mc.duke.edu/index.php

An Alzheimer's disease center (ADC) that offers support services for families caring for persons with memory disorders, community outreach and education programs, in addition to its clinical and basic research activities. Information on current scientific and clinical findings is offered to the general public, medical and scientific community. An important emphasis of the Bryan ADRC is to advance basic medical discovery concerning AD and related dementias. This basic science mission is facilitated through the DNA cell repository located in the Institute of Genome Sciences and Policy (IGSP) and the Bryan ADRC brain donation program of the Kathleen Price Bryan Brain Bank. These affiliated Bryan ADRC programs provide a source of fresh brain tissue.

Proper citation: Joseph and Kathleen Bryan Alzheimer's Disease Research Center (RRID:SCR_005025) Copy   

•   Source: SciCrunch Registry

http://elderaffairs.state.fl.us/doea/BrainBank/index.php

THIS RESOURCE IS NO LONGER IN SERVICE. Documented on January 11, 2023. A service and research oriented network of statewide regional brain bank sites. The intent of the brain bank program is to study brains of persons clinically diagnosed with dementia and provide tissue for research after their deaths. Mt. Sinai Medical Center contracts annually with the State of Florida to operate the primary brain bank. Coordinators at regional brain bank sites in Orlando, Tampa and Pensacola assist in recruiting participants and act as liaisons between the brain bank and participant families. Alzheimer's disease respite care program providers, memory disorder clinics, and model day care programs also recruit brain bank participants. The Florida Brain Bank supports collaborative research programs related to Alzheimer's disease and other degenerative disorders of the brain.

Proper citation: Florida Brain Bank (RRID:SCR_004936) Copy   

•   Source: SciCrunch Registry

http://www.adrccares.org/

The Alzheimer's and Dementia Resource Center (ADRC) facilitates tissue donations for the Brain Bank Research Program in order to help find better treatments, more diagnostic tools and a cure for Alzheimer's disease and dementia. The Brain Bank Program is administered by Mount Sinai Medical Center in Miami Beach and under contract with the Florida Department of Elder Affairs. ADRC also provides caregivers with the educational resources, spiritual comfort and emotional support. The ADRC facilitates training for professional caregivers that meets requirements for the Florida Department of Elder Affairs.

Proper citation: Alzheimer's and Dementia Resource Center (RRID:SCR_004924) Copy   

•   Source: SciCrunch Registry

http://phenotype.mc.vanderbilt.edu/

Collaborative environment of building and validating electronic phenotype algorithms using electronic medical records (EMRs) and natural language processing (NLP) for use in genome-wide association studies (GWAS). On this site you can: View existing algorithms, Enter or create new algorithms, Collaborate with others to create or review algorithms, View implementation details for existing algorithms. The Electronic Medical Records and Genomics Network (eMERGE) has investigated whether data captured through routine clinical care using electronic medical records (EMRs) can identify disease phenotypes with sufficient positive and negative predictive values for use in genome-wide association studies (GWAS). Most EMRs captured key information (diagnoses, medications, laboratory tests) used to define phenotypes in a structured format; in addition, natural language processing has also been shown to improve case identification rates. PheKB is an outgrowth of that validation effort. Phenotype algorithms can be viewed by data modalities or methods used: CPT codes, ICD 10 codes, ICD 9 codes, Laboratories, Medications, Vital Signs, Natural Language Processing Algorithms can also be viewed by: * Implementation results (positive predictive value, sensitivity, publications) * Institution * Work Group

Proper citation: PheKB (RRID:SCR_005292) Copy   

•   Source: SciCrunch Registry

http://talkbank.org/

Databases of transcript and media data collected from conversations with adults and older children to foster fundamental research in the study of human and animal communication. Conversations with children are available from CHILDES. All of the data is transcribed in CHAT and CA/CHAT formats. Databases of the following types are included in the collection: Aphasia patient speech, Child speech, Study of Phonological Development, Conversation Analysis, and Bilingualism and Second Language Acquisition. TalkBank will use these databases to advance the development of standards and tools for creating, sharing, searching, and commenting upon primary materials via networked computers.

Proper citation: TalkBank (RRID:SCR_003242) Copy   

•   Source: SciCrunch Registry

http://www.nimh.nih.gov/labs-at-nimh/research-areas/research-support-services/hbcc/index.shtml

A collection of brain tissue from individuals suffering from schizophrenia, bipolar disorder, depression, anxiety disorders, and substance abuse, as well as healthy individuals. The research mission of the NIMH Brain Bank is to better understand the underlying biological mechanisms and pathways that contribute to schizophrenia and other neuropsychiatric disorders, as well as to study normal human brain development.

Proper citation: NIMH Brain Tissue Collection (RRID:SCR_008726) Copy   

•   Source: SciCrunch Registry