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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   

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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   

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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   

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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   

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http://med.emory.edu/ADRC/research/tissue_biospecimen_banking_facility.html

The Alzheimer's Disease Research Center at Emery University maintains an active brain bank to facilitate the acquisition, storage, handling and distribution of well-characterized autopsy brain tissue and other materials to investigators. It contains frozen tissue and brain specimens, formalin fixed tissue, paraformaldehyde fixed tissue, and cryopreserved tissue. The ADRC also has access to tissues and samples related to other neurodegenerative diseases. It contains plasma samples, serum samples, lymphoblast cell lines, and cerebrospinal fluid.

Proper citation: Emory ADRC Tissue and Biospecimen Banking Facility (RRID:SCR_000551) Copy   

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http://www.mknt.hu/sites/default/files/NEPSYBANK_0.doc

The Hungarian Society of Clinical Neurgenetics established a nationwide collaboration for prospective collection of human biological materials and databases from patient with neurological and psychiatric diseases. The basic triangle of the NEPSYBANK is the sample, the information and the study management. The present participants of the NEPSYBANK are the Department of Neurology and Psychiatry of the four Medical Universities (in Budapest, Debrecen, Pecs, Szeged) and the National Institute of Psychiatry and Neurology in Budapest. The NEPSYBANK is a disease based biobank collecting both phenotypical and environmental data and biological materials such as DNA/RNA, whole blood, plasma, cerebral spinal fluid, muscle / nerve / skin biopsy, brain, and fibroblast. The target of the diseases is presently (Phase I): stroke syndromes, dementias, movement disorders, motoneuron diseases, epilepsy, multiple sclerosis, schizophrenia, alcohol addiction. In the near future (Phase II.) it is planned to enlarge the scale with headaches, disorders of the peripheral nerves, disorders of neuromuscular transmission, disorders of skeletal muscle, depression, anxiety. DNA/RNA is usually extracted from whole blood, but occasionally different tissues such as muscle, brain etc. can be used as well. The extracting procedures differ among the institutes, but in all cases the concentration and the quality of the DNA/RNA must be registered in the database. Participating institutional biobanks have committed themselves to follow common quality standards, which provide access to samples after prioritization on scientific grounds only. In every case the following data are registered. 1. General data: main bank categories, age, sex, ethnicity, body height, body weight, economic stats, education, type of place of living, marital status, birth complications, alcohol, drugs, smoking. 2. Sample properties (sample ID, type of sample, date of extraction, concentration, and level of purity). General patient data as blood pressure, heart rate, internal medical status, ECG, additional diseases. Disease specific question e.g. in schizophrenia the diagnosis after DSMIV and ICD 10, detailed diagnostic questions after both classification, detailed psychiatric and neurological status, laboratory findings, rating scales, data of neuroimaging, genetic tests, applied medication (with generic name, dose, duration), adverse drug effects and other treatments. The Biobank Information Management System (BIMS) is responsible for linkage of databases containing information on the individual sample donors. If you want to have samples from the NEPSYBANK an application must be submitted containing the following information: short research plan including aims and study design, ethic application with a positive decision, specific demands regarding the right of disposition, agreements with grant organizations which regulate immaterial property, information about financing (academic grants, support from industry). All participants have the right to withdraw their samples through a simple order.

Proper citation: Hungarian Neurological-Psychiatric Biobank (RRID:SCR_003715) Copy   

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http://www.tmf-ev.de/BiobankenRegisterEN/Registry.aspx?udt_2021_param_detail=84

A brain bank which collects brain tissue from patients who died from various neurological and psychiatric diseases. These tissues are available for biochemical, molecular biological, and other work groups with the aim of supporting research on the pathogenesis, diagnosis, and therapy of these diseases. Collected brains are clinically and neuropathologically well-characterized. The collection and distribution of brain tissue samples is an ongoing process. NeuroBiobank Munich offers help with the organization and implementation of autopsies as well as with the neuropathologic diagnostics. The thematic emphasis of the NeuroBiobank Munich is Parkinson's disease and demential degenerative disorders such as Alzheimer's disease or Creutzfeldt-Jakob disease. NeuroBiobank Munich coordinates the German national brain tissue bank (BrainNet) and the European brain tissue bank (BrainNet Europe).

Proper citation: NeuroBiobank Munich (RRID:SCR_005014) Copy   

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http://www.alzheimersinfo.org/research.html

A brain bank which has obtained brains from individuals who suffered from some form of dementia. Clinical records and a family history are obtained for each donor in order to better understand each dementing illness and to work towards the improvement of diagnosing, treating, and preventing these diseases.

Proper citation: Dementia Brain Bank Research Program (RRID:SCR_005129) Copy   

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http://www.uky.edu/coa/adc/investigators-research-resources

An organization which includes a tissue bank, a database, study design consultation, clinical resources, and a community registry database. The UK-ADC shares data with the NIA national database (NACC), as well as with independent, qualified investigators both within and outside the UK-ADC. This resource's associated tissue bank is comprised of anonymized brain tissue, blood, and cerebrospinal fluid samples from patients in the clinic, as well as frozen post-mortem brain tissue samples. This organization also shares research resources with the National Alzheimer's Coordinating Center (NACC), NACC collaborative initiatives, the Alzheimer's Disease Neuroimaging Initiative (ADNI), other Alzheimer Disease Centers (ADCs), and any qualified investigators from either the University of Kentucky or the general scientific community.

Proper citation: University of Kentucky's Alzheimer's Disease Center (RRID:SCR_008766) Copy   

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http://aging.brain-map.org/

The Aging, Dementia and Traumatic Brain Injury Study is a detailed neuropathologic, molecular and transcriptomic characterization of brains of control and TBI exposure cases from a unique aged population-based cohort from the Adult Changes in Thought (ACT) study. The study contains six data sets: histology and immunohistochemistry, in situ hybridization, rna-seq, protein quantification by luminex, isoprostane quantification, and specimen metadata.

Proper citation: Aging Dementia and Traumatic Brain Injury Study (RRID:SCR_014554) Copy   

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http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00158

Data set from an ongoing, longitudinal-sequential study of adult-cognitive development, which began in 1956, that focuses on individual differences in age-related changes and differences across cohorts. The general purpose of the study is to examine the changes in intelligence and various abilities throughout adulthood. The data provide a normative base to determine the ages of detectable decrements in ability and the magnitudes of the decrements. The study also seeks to examine patterns of generational differences and age-related differences and to determine the effects of educational intervention on intellectual decline. This study is a mixed cross-sectional, longitudinal, and time-lag design. Included are family studies of cognitive similarity, prospective studies of early signs of dementia via psychological and genetic markers, as well as the investigation of personality and demographic variables that affect cognitive change in adults from young adulthood to advanced old age. Questionnaire topics include health behavior, behavioral rigidity, family environment, Life Complexity Inventory, CES-D Depression, and cognitive and neuropsychology batteries. Group Health Cooperative of Puget Sound Medical Records and Pharmacy Records. * Dates of Study: 1956-Present * Study Features: Longitudinal * Sample Size: 6,000+

Proper citation: Seattle Longitudinal Study (RRID:SCR_003654) Copy   

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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   

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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   

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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   

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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   

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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   

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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   

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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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