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| Resource Name | Proper Citation | Abbreviations | Resource Type |
Description |
Keywords | Resource Relationships | |||||||||||||
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Neuropathology of CTE and Delayed Effects of TBI: Toward In-Vivo Diagnostics Resource Report Resource Website |
Neuropathology of CTE and Delayed Effects of TBI: Toward In-Vivo Diagnostics (RRID:SCR_012951) | Neuropathology of CTE and Delayed Effects of TBI: Toward In-Vivo Diagnostics | portal, research forum portal, data or information resource, topical portal, disease-related portal | A multi-center and multi-disciplinary study designed to dramatically increase understanding of chronic traumatic encephalopathy (CTE) and other late effects of traumatic brain injury (TBI). Overlapping clinical features, postmortem pathologies and patterns of involvement exist in TBI, CTE, and Alzheimer''s disease pose challenges to accurate diagnosis. Premortem diagnosis of CTE is currently impossible. The neuropathological consequences of single mild or moderate-severe TBI and its relationship with CTE and known dementias are unclear. The proposed project will leverage extensive resources from an ongoing population-based prospective cohort study of brain aging (Adult Changes in Thought; ACT, n=2,305) which includes excellent medical, behavioral, and genetic characterization of a cohort (20% of whom have a history of mild-moderate TBI) in addition to state-of-the-art neuropathology workup upon death. Neuropathological study of TBI effects can begin immediately in the existing ACT autopsy sample (n=489, 20% with TBI exposure). Additional cohorts of TBI- exposed individuals will come from the Brain Injury Research Center at Mount Sinai (n=150 individuals with moderate-severe TBI), the University of Texas Southwestern (n=50 retired boxers with repetitive TBI exposure), and the National Football League (n=76 retired players with repetitive TBI exposure). All participants in the proposed study (ACT and other sites) will undergo uniform harmonized neurobehavioral assessment (chosen to maximize correspondence with existing large-scale TBI and dementia studies), MRI scan, and genomic analysis. Those individuals who expire during the course of the study will undergo ex-vivo neuroimaging and extensive neuropathological exam using state-of-the-art techniques (such as Histelide) designed to quantify tau and A�� in whole brain specimens. Only by examining postmortem pathology in a sample of individuals with varying levels of TBI exposure who are well characterized during life (as proposed herein) can postmortem pathology facilitate identification of in-vivo biomarkers that can act as diagnostic tools. This project represents the most systematic and scientifically rigorous effort to date to develop a more complete understanding of the long-term clinical and neuropathological sequelae of single and multiple TBI. | cognitive decline, health decline, dementia, symptom, incidence, prevalence, risk factor, causal role, multifocal tauopathy, neuropathology, neuroimaging, brain, biomarker, diagnosis, clinical | has parent organization: Icahn School of Medicine at Mount Sinai; New York; USA | Chronic traumatic encephalopathy, Traumatic brain injury, Aging | nlx_156787 | SCR_012951 | Neuropathology of CTE and Late Effects of TBI: Toward In-Vivo Diagnostics, Neuropathology of Chronic Traumatic Encephalopathy (CTE) and Late Effects of Traumatic Brain Injury (TBI): Toward In-Vivo Diagnostics | 2026-02-15 09:20:22 | 0 | |||||||
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Northwestern CNADC Tissue Bank / Neuropathology Core Resource Report Resource Website |
Northwestern CNADC Tissue Bank / Neuropathology Core (RRID:SCR_013178) | brain bank, material resource, tissue bank, biomaterial supply resource | 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. | brain tissue, brain, tissue, plasma, blood, dna, cerebral spinal fluid, paraformaldehyde-fixed, frozen, paraffin block, unfixed, late adult human, autopsy, post-mortem, clinical dementia rating scale, mini mental state examination, neuropathology, clinical data, alzheimer's disease, dementia, normal control, non-demented control, dementia with lewy body, frontotemporal lobar degeneration, pick disease, corticobasal degeneration, tauopathy, progressive supranuclear palsy, tangle-predominant senile dementia, amyotrophic lateral sclerosis, motor neuron disease, vascular dementia, mild cognitive impairment, research, brain bank, tissue |
is listed by: One Mind Biospecimen Bank Listing has parent organization: Northwestern University Cognitive Neurology and Alzheimers Disease Center |
Alzheimer's disease, Dementia, Dementia with Lewy body, Frontotemporal lobar degeneration, Pick disease, Corticobasal degeneration, Tauopathy, Progressive Supranuclear Palsy, Tangle-predominant senile dementia, Amyotrophic Lateral Sclerosis, Motor Neuron Disease, Vascular dementia, Mild cognitive impairment, Aging | NIA P30 AG13854 | Available to the research community | nlx_144054 | http://www.brain.northwestern.edu/mdad/neuropathology.html | SCR_013178 | Northwestern University Cognitive Neurology and Alzheimer's Disease Center Tissue/Neuropathology Core, Northwestern University CNADC Tissue/Neuropathology Core, Northwestern's Cognitive Neurology and Alzheimers Disease Center Tissue/Neuropathology Core, Northwestern Tissue/Neuropathology Core, Northwestern Neuropathology Core of CNADC, Northwestern Cognitive Neurology and Alzheimer's Disease Center Tissue/Neuropathology Core, Northwestern Cognitive Neurology Alzheimer's Disease Center Tissue/Neuropathology Core, Northwestern CNADC Tissue / Neuropathology Core, Northwestern University CNADC Tissue / Neuropathology Core | 2026-02-15 09:20:43 | 0 | |||||
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SIU Center for Alzheimer's Disease and Related Disorders Resource Report Resource Website |
SIU Center for Alzheimer's Disease and Related Disorders (RRID:SCR_013199) | SIU CADRD | portal, topical portal, service resource, patient-support portal, data or information resource, training service resource, disease-related portal | 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. | alzheimer's disease, dementia, clinical trial, clinical, late adult human, research, patient care, education, training service |
has parent organization: Southern Illinois University School of Medicine; Illinois; USA is parent organization of: SIU CADRD Dementia Brain Autopsy Program |
Alzheimer's disease, Dementia, Aging | Public | nlx_144045 | SCR_013199 | SIU School of Medicine Center for Alzheimer's Disease and Related Disorders | 2026-02-15 09:20:43 | 0 | ||||||
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AREDS2: The Age-Related Eye Disease Study 2 Resource Report Resource Website |
AREDS2: The Age-Related Eye Disease Study 2 (RRID:SCR_006306) | AREDS2 | portal, clinical trial, research forum portal, data or information resource, topical portal, disease-related portal | Study designed to assess the effects of oral supplementation of high doses of macular xanthophylls (lutein and zeaxanthin) and/or omega -3 LCPUFAs (DHA and EPA) for the treatment of AMD and cataract. | oral, supplement, xanthophyll, omega-3 fatty acid, macular, degeneration, eye, disease, clinical, trial, age, related, cataract | Age-Related Macular Degeneration, Cataract, Aging | U.S. Department of Health and Human Services HHSN260200500007C; NEI N01 EY50007 |
PMID:22840421 | nif-0000-00522 | SCR_006306 | AREDS2, Age-Related Eye Disease Study 2 | 2026-02-15 09:19:14 | 0 | ||||||
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Fondazione Centro San Raffaele; Milan; Italy Resource Report Resource Website |
Fondazione Centro San Raffaele; Milan; Italy (RRID:SCR_003894) | FCSR | organization portal, funding resource, data or information resource, portal | A non-profit organization to support the research of the IRCCS San Raffaele Hospital with the aim of helping the development of science in the service of medicine. To make progress and achieve new successes, which may also be of benefit to future generations, the Fondazione Centro San Raffaele Hospital supports through participation in invitations to national and international research and fundraising activities to individuals and businesses. The lines of research in 2013 which focuses on the activities of the Foundation, in synergy with the San Raffaele hospital: # Molecular and functional approaches to the study of neurological and psychiatric disorders # Molecular and cellular therapies for regenerative medicine # Study and modulation of innate and adaptive immune response # Cellular and molecular approaches to the study of solid tumors and blood # Molecular and cellular approaches to the study and treatment of cardiovascular and metabolic diseases # Genetic mechanisms, molecular and cellular disease and aging # Genomics and post-genomics for the study of the mechanisms of disease and response to drugs # Molecular and cellular imaging for the study of oncological diseases and molecular imaging of cardiovascular disease | medicine | is related to: ONE Study | Aging, Neurological disorder, Psychiatric disorder, Cardiovascular disease, Metabolic disease, Molecular disease, Cellular disease, Drug-related disease, Oncological disease | nlx_158224 | SCR_003894 | Fondazione Centro San Raffaele | 2026-02-15 09:18:36 | 0 | |||||||
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UAB Alzheimer's Disease Center Resource Report Resource Website |
UAB Alzheimer's Disease Center (RRID:SCR_004305) | ADC, UAB ADC | brain bank, material resource, tissue bank, biomaterial supply resource | The UAB Alzheimer's Disease Center provides comprehensive treatment for Alzheimer's patients while also promoting research for the prevention and cure of Alzheimer's disease and related disorders. The ADC is an interdisciplinary program of scientists working in areas including neurology, psychiatry, genetics, and psychology. The Center provides comprehensive treatment and promotes research for the prevention and/or cure of Alzheimer's disease and other related disorders with memory loss and impaired cognition. A major emphasis of research is the maintenance of a clinical research database comprised of neurological, medical, and neuropsychological test data from participants seen in the ADRC Clinical study since 1999, many of whom have been followed for several years in the study. | brain, alzheimer's disease, mild cognitive impairment, brain donation, clinical research database |
is listed by: One Mind Biospecimen Bank Listing has parent organization: University of Alabama at Birmingham; Alabama; USA |
Alzheimer's disease, Mild Cognitive Impairment, Aging | NIA 1P50 AG16582 | Researchers interested in Alzheimer's disease may access the clinical research data | nlx_143674 | http://main.uab.edu/adc/ http://www.uab.edu/medicine/neurology/alzheimers-disease-center | SCR_004305 | UAB Alzheimer's Disease Center, University of Alabama at Birmingham Alzheimer's Disease Center | 2026-02-15 09:18:41 | 0 | ||||
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BrainNet Europe Resource Report Resource Website 10+ mentions |
BrainNet Europe (RRID:SCR_004461) | BNE | organization portal, data or information resource, consortium, portal | 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. | central nervous system, clinical, brain research, brain tissue, brain, tissue, late adult human, brain bank, gold standard, neuropathological diagnosis, tissue handling, safety, quality control, ethics, post mortem, data sharing, tissue sampling, autopsy, microdissection, diagnosis |
is listed by: One Mind Biospecimen Bank Listing is listed by: Consortia-pedia is related to: Medical University of Vienna Institute of Neurology is related to: Human Brain Tissue Bank has parent organization: Ludwig-Maximilians-University; Munich; Germany is parent organization of: BrainNet Europe Sampling Protocols |
Central nervous system disorder, Normal control, Aging, Neurological disease, Psychiatric disease, Pick''s disease, Dementia | European Union FP6 LSHM-CT-2004-503039 | THIS RESOURCE IS NO LONGER IN SERVICE | nlx_45326 | SCR_004461 | BrainNet Europe Consortium | 2026-02-15 09:18:43 | 24 | |||||
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National Archive of Computerized Data on Aging (NACDA) Resource Report Resource Website 10+ mentions |
National Archive of Computerized Data on Aging (NACDA) (RRID:SCR_005876) | NACDA | portal, database, service resource, storage service resource, data repository, data or information resource, topical portal | Archive of data relevant to gerontological and aging research. Used to advance research on aging. Subjects include demographic, social, economic, and psychological characteristics of older adults, physical health and functioning of older adults, and health care needs of older adults. NACDA staff represents team of professional researchers, archivists and technicians who work together to obtain, process, distribute, and promote data relevant to aging research. | gerontology, secondary analysis, data set, age, intelligence, life span, productive, late adult human |
is recommended by: National Library of Medicine lists: Social Environment and Biomarkers of Aging Study in Taiwan lists: Advanced Cognitive Training for Independent and Vital Elderly (ACTIVE) is listed by: re3data.org is related to: Alameda County Health and Ways of Living Study is related to: Charleston Heart Study is related to: Census Microdata Samples Project is related to: Chinese Longitudinal Healthy Longevity Survey (CLHLS) is related to: Early Indicators of Later Work Levels Disease and Death (EI) - Union Army Samples Public Health and Ecological Datasets is related to: Cross-National Equivalent Files is related to: National Survey of Midlife Development in the United States is related to: Precursors of Premature Disease and Death is related to: New Beneficiary Data System is related to: National Survey of Self-Care and Aging is related to: Aging Status and Sense of Control (ASOC) has parent organization: Inter-university Consortium for Political and Social Research (ICPSR) is parent organization of: Established Populations for Epidemiologic Studies of the Elderly is parent organization of: National Survey of the Japanese Elderly is parent organization of: Piedmont Health Survey of the Elderly is parent organization of: Second Malaysian Family Life Survey is parent organization of: Longitudinal Study of Generations is parent organization of: Longitudinal Study of Elderly Mexican American Health is parent organization of: Matlab Health and Socio-Economic Survey is parent organization of: National Long Term Care Survey is parent organization of: National Nursing Home Survey Follow-Up is parent organization of: National Social Life Health and Aging Project (NSHAP) is parent organization of: National Survey of Families and Households |
Aging | NIA | Restricted | nlx_149438, r3d100010259 | https://www.icpsr.umich.edu/icpsrweb/NACDA/index.jsp https://doi.org/10.17616/R3Z31W |
SCR_005876 | , NACDA, National Archive of Computerized Data on Aging | 2026-02-15 09:19:05 | 21 | ||||
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ADNI - Alzheimer's Disease Neuroimaging Initiative Resource Report Resource Website 1000+ mentions |
ADNI - Alzheimer's Disease Neuroimaging Initiative (RRID:SCR_003007) | ADNI | database, service resource, storage service resource, data repository, data or information resource | Database of the results of the ADNI study. ADNI is an initiative to develop biomarker-based methods to detect and track the progression of Alzheimer's disease (AD) that provides access to qualified scientists to their database of imaging, clinical, genomic, and biomarker data. | mri, alzheimer’s disease, cognitive assessment, neuroimaging, disease study, disease progression, biomarker, FASEB list |
is used by: Biomarkers Across Neurodegenerative Diseases is listed by: NeuroImaging Tools and Resources Collaboratory (NITRC) is listed by: Consortia-pedia is related to: Alzheimers Association is related to: Alzheimers Drug Discovery Foundation |
Alzheimer's disease, Mild Cognitive Impairment, Elderly control, Traumatic brain injury, Post-Traumatic Stress Disorder, Aging | NIA U01AG024904; NIA P30AG010129; NIA K01AG030514 |
Application required, Account required, This resource is available to the scientific community | SciRes_000144, nif-0000-00516 | http://adni.loni.usc.edu/ http://www.nitrc.org/projects/adni/ http://www.adni3.org/ |
http://www.loni.ucla.edu/ADNI/ | SCR_003007 | Alzheimers Disease Neuroimaging Initiative, Alzheimer's Disease Neuroimaging Initiative (ADNI), Alzheimer's Disease Neuroimaging Initiative | 2026-02-15 09:18:25 | 3850 | |||
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KI Biobank - HARMONY Resource Report Resource Website 1+ mentions |
KI Biobank - HARMONY (RRID:SCR_008884) | HARMONY | material resource, biomaterial supply resource | 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) | interview, late adult human, clinical evaluation, association study, candidate gene, gene, risk factor, twin, longitudinal |
is listed by: One Mind Biospecimen Bank Listing is related to: Swedish Twin Registry is related to: KI Biobank - SATSA has parent organization: Karolisnka Biobank |
Dementia, Alzheimer''''s disease, Discordant twin, Aging | NIH | nlx_151298 | http://ki.se/en/meb/dementia-in-swedish-twins-harmony | SCR_008884 | Dementia in Swedish Twins (HARMONY) | 2026-02-15 09:19:58 | 2 | |||||
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Swedish Twin Registry Resource Report Resource Website 1+ mentions |
Swedish Twin Registry (RRID:SCR_008883) | STR | people resource, patient registry | The Swedish Registry was established in the 1960s to study how smoking affects our health. Then little was known about the dangers of smoking. There is, at present, information on approximately 85 000 twin pairs, both monozygotic and dizygotic. As described by Lichtenstein et al., 2002, Pedersen et al., 2002 and Lichtenstein et al., 2006, the Swedish Twin Registry (STR) is the largest and most comprehensive twin registry in the world. Founded in 1961, the registry covers all like-sexed twin births since 1886, and all twin births (like- and unlike-sexed) since 1906. There are currently 89,000 pairs of twins registered, of which both members of 65,000 pairs are alive, with regular updates concerning vital status, addresses, hospital discharges, tumors, and causes of death, through subscriptions to national registries. Furthermore, there is extensive epidemiological data (exposures, symptoms and disease through questionnaires or interviews) on all pairs born 1986 or earlier, for most individuals involving 30 year baseline to follow-up information. Furthermore, data from the cohort of twins born since 1991 have been or will be contacted with a telephone interview with the parents of twins as they turn 9 (CATSS). Because the STR is an (inter)national resource, we are receptive to collaboration academic and industry-based researchers. Regardless of the type of research all potential collaborations or data access agreements must be first reviewed Steering Committee of the STR. | zygosity, age, sex, education, monozygotic, dizygotic, child, adolescent, adult, tobacco, nicotine, gene, environment |
is used by: KI Biobank - STAR is used by: KI Biobank - SATSA is related to: KI Biobank is related to: KI Biobank - KOL is related to: KI Biobank STAGE-ADHD is related to: KI Biobank - EuroClot is related to: KI Biobank - Economical Behavior is related to: CATSS - Child and Adolescent Twin Study in Sweden is related to: DOGSS is related to: KI Biobank - SALTY is related to: KI Biobank - STAGE is related to: KI Biobank - Parkinson is related to: KI Biobank - HARMONY is related to: Twin Study of Child and Adolescent Development - TCHAD is related to: KI Biobank - TwinGene has parent organization: Karolinska Institute; Stockholm; Sweden |
Twin, Smoking, Aging | Collaboration: Receptive to collaboration academic and industry-based researchers. Regardless of the type of research all potential collaborations or data access agreements must be first reviewed Steering Committee of the STR. | nlx_151292 | http://ki.se/ki/jsp/polopoly.jsp?d=9610&l=en | SCR_008883 | 2026-02-15 09:19:35 | 6 | ||||||
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KI Biobank - EXT Resource Report Resource Website |
KI Biobank - EXT (RRID:SCR_008875) | KI Biobank - EXT | material resource, biomaterial supply resource | THIS RESOURCE IS NO LONGER IN SERVICE, documented August 29, 2016. The aim of EXT (extinction) is to investigate the relation between specific genetic variations and cognitive control process in fear. Blood samples will be collected from about 300 healthy, young individuals (age 18-35). | genetic variation, cognitive control, fear, healthy, early adult, gene |
is listed by: One Mind Biospecimen Bank Listing has parent organization: Karolisnka Biobank |
Healthy, Aging | THIS RESOURCE IS NO LONGER IN SERVICE | nlx_149601 | SCR_008875 | KI Biobank - Extinction | 2026-02-15 09:19:55 | 0 | ||||||
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SHEEP - Stockholm Heart Epidemiology Program Resource Report Resource Website 1+ mentions |
SHEEP - Stockholm Heart Epidemiology Program (RRID:SCR_008905) | KI Biobank - SHEEP | material resource, biomaterial supply resource | DNA from a population-based case-control study designed to investigate causes of myocardial infarction. The study population comprised all Swedish citizens living in the county of Stockholm who were 45 to 70 years of age and free of previously clinically diagnosed MI. Sample types: * DNA Number of sample donors: 2831 (sample collection completed) | heart, epidemiology, cardiac disease, middle adult human, late adult human, aging |
is listed by: One Mind Biospecimen Bank Listing has parent organization: Karolisnka Biobank |
Myocardial infarction, Normal, Aging | nlx_151444 | http://ki.se/ki/jsp/polopoly.jsp?d=29346&a=31574&l=en | SCR_008905 | Stockholm Heart Epidemiology Program | 2026-02-15 09:19:59 | 2 | ||||||
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National Long Term Care Survey Resource Report Resource Website |
National Long Term Care Survey (RRID:SCR_008943) | NLTCS | material resource, biomaterial supply resource | A data set of a longitudinal survey designed to study changes in the health and functional status of older Americans (aged 65+). It also tracks health expenditures, Medicare service use, and the availability of personal, family, and community resources for caregiving. The survey began in 1982, and follow-up surveys were conducted in 1984, 1989, 1994, 1999, and 2004. The surveys are of the entire Medicare-enrolled aged population with a particular emphasis on the functionally impaired. As sample persons are followed through the Medicare record system, virtually 100% of cases can be longitudinally tracked so that declines, as well as increases, in disability may be identified as well as exact dates of death. NLTCS sample persons are followed until death and are permanently and continuously linked to the Medicare record system from which they are drawn. Linkage to the Medicare Part A and B service use records extends from 1982 to 2004, so that detailed Medicare expenditures and types of service use may be studied. Through the careful application of methods to reduce non-sampling error, the surveys provide nationally representative data on: * The prevalence and patterns of functional limitations, both physical and cognitive; * Longitudinal and cohort patterns of change in functional limitation and mortality over 22 years; * Medical conditions and recent medical problems; * Health care services used; * The kind and amount of formal and informal services received by impaired individuals and how it is paid for; * Demographic and economic characteristics like age, race, sex, marital status, education, and income and assets; * Out-of-pocket expenditures for health care services and other sources of payment; * Housing and neighborhood characteristics. In each of the six surveys, large samples (N~20,000) of the oldest-old population (i.e., those 85 and over) are obtained. The survey data (i.e., detailed community and institutional interviews. The linkage to Medicare enrollment files between 1982 and 2004 was 100%, i.e., there was complete follow-up of all cases (including survey non-respondents) for Medicare eligibility (and for most years, detailed Part A and B use), mortality, and date of death. Medicare mortality records (and dates of death) are available for 1982 to 2005. The number of deaths (i.e., about 32,000 from 1982 to 2005) is large enough that detailed mortality analyses can be done. Over the 22 years spanned by the six surveys, a total of 49,242 distinct individuals were followed from and linked to Medicare records. Data Availability: The data are available through ICPSR as Study No. 9681. The data are available only on CD-ROM and only upon completion of a signed Data Use Agreement. Continuously linked Medicare data (1982 through 2004) for the National Long Term Care Surveys are only available from CMS. * Dates of Study: 1982-2004 * Study Features: Longitudinal, Anthropometric Measures * Sample Size: ** 1982: 20,485 ** 1984: 25,401 ** 1989: 17,565 ** 1994: 19,171 ** 1999: 19,907 ** 2004: 20,474 Link: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09681 | longitudinal, survey, late adult human, interview, medicare, questionnaire, disabled, non-disabled, community, institution, disability, medical condition, education, income, blood, buccal wash, activity, caregiver, diet, family relations, health care service, health services utilization, health status, life satisfaction, live expectancy, living arrangement, marriage, perception, quality of life, apoe, sod2, physical, cognitive, functional limitation, mortality, demographic, economic, race, marital status, asset, payment, housing, neighborhood |
is listed by: One Mind Biospecimen Bank Listing is listed by: Inter-university Consortium for Political and Social Research (ICPSR) has parent organization: Duke University; North Carolina; USA has parent organization: National Archive of Computerized Data on Aging (NACDA) |
Aging, Functionally impaired, Late adult human, Non-disabled | NIA N2 U01 AG0007198 | Public, Data use agreement required. | nlx_151860 | http://dx.doi.org/10.3886/ICPSR09681.v5 | SCR_008943 | NLTCS: National Long-Term Care Survey, National Long Term Care Survey (NLTCS), National Long-Term Care Survey | 2026-02-15 09:19:59 | 0 | ||||
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Layton Center Biomarkers and Genetics Resource Report Resource Website |
Layton Center Biomarkers and Genetics (RRID:SCR_008824) | Layton Biomarkers and Genetics | material resource, biomaterial supply resource | 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. | genomic dna, lymphoblast cell line, plasma, dna, cell line, lymphoblast, dementia, late adult human, normal, alzheimer's disease, clinical data, genotype data, genotype, clinical, family history |
is listed by: One Mind Biospecimen Bank Listing has parent organization: OHSU Layton Aging and Alzheimer's Disease Center |
Aging, Dementia, Alzheimer's disease | NIA P30 AG08017 | Researchers must fill out request forms | nlx_144448 | SCR_008824 | Layton Aging and Alzheimers Disease Center Biomarkers and Genetics, Layton Center Biomarkers and Genetics | 2026-02-15 09:19:57 | 0 | |||||
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Iowa 65+ Rural Health Study Resource Report Resource Website 1+ mentions |
Iowa 65+ Rural Health Study (RRID:SCR_008937) | Iowa 65+ Rural Health Study | material resource, biomaterial supply resource | A data set and sister study to the Established Populations for Epidemiologic Study of the Elderly (EPESE). It complements the findings of the three other EPESE sites (East Boston, MA; New Haven, CT; and north-central North Carolina) and has common items and methods in many domains. The target population was all persons 65 years and older in two rural counties in east central Iowa: Iowa and Washington counties. In 1981 a census of older persons in the target area was conducted by the investigators, creating an ascertainment list having 99% of the persons identified in the previous year by the US Decennial Census. The baseline survey was conducted between December 1991 and August 1992. Overall, 3,673 persons, or 80% of the target population were interviewed: 65-69 (N = 986), 70-74 (N = 988), 75-79 (N = 815), 80-84 (N = 523), and 85+ (N = 361). The population is virtually entirely Caucasian. Subsequently, personal follow-up surveys were conducted 3, 6, and 10 years after the baseline survey. Telephone surveys were conducted 1, 2, 4, 5, and 7 years after the baseline survey. Data collected from respondents included information about demographics, major health conditions, health care utilization, hearing and vision, weight and height, elements of nutrition, sleep problems, depressive and anxiety symptoms, alcohol and tobacco use, cognitive performance and dementia screening, incontinence measures, life satisfaction index, social networks and support, worries, medication use, activities of daily living, dental problems, satisfaction with medical care, life events, brief economic status, automobile driving habits, multiple measures of physical and disability status, and blood pressure. At follow-up #6, there were a series of physical function performance tests, the so-called NIA-MacArthur Battery, and blood was drawn for biochemical tests and potentially other determinations. In addition, some datasets were linked to the EPESE dataset under appropriate restrictions, including Iowa state driving records and clinical diagnoses and medical care utilization from the Centers for Medicare and Medicaid Services. Data Availability: The dataset has been shared with several investigative teams under special arrangement with the Principal Investigator. Early surveys are available from ICPSR. A small storage of blood is available for exploratory analyses. * Dates of Study: 1991-2001 * Study Features: Longitudinal, Anthropometric Measures, Biomarkers * Sample Size: 1991-2: 3,673 (baseline) Link: EPESE 1981-93 ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09915 | blood, mortality, hospitalization, chronic disease, late adult human, longitudinal, anthropometry, biomarker, survey, caucasian, demographics, health, health care, hearing, vision, weight, height, nutrition, sleep, depression, anxiety, alcohol use, tobacco use, cognition, dementia, incontinence, social, medication use, activity, dental, satisfaction, medical care, economic status, driving, physical, disability, blood pressure, interview |
is listed by: One Mind Biospecimen Bank Listing is listed by: Inter-university Consortium for Political and Social Research (ICPSR) has parent organization: Established Populations for Epidemiologic Studies of the Elderly |
Aging | NIA | Public | nlx_151838 | SCR_008937 | Iowa 65 and over Rural Health Study, Iowa 65 Plus Rural Health Study | 2026-02-15 09:19:55 | 3 | |||||
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Vietnam Era Twin Registry Biospecimen Repository Resource Report Resource Website |
Vietnam Era Twin Registry Biospecimen Repository (RRID:SCR_008808) | VET Registry Biospecimen Repository | material resource, biomaterial supply resource | The Vietnam Era Twin (VET) Registry maintains a repository of biological specimens obtained from Registry members. The VET Registry Biospecimen Repository includes DNA, plasma, and serum samples obtained from selected VET Registry members. As the VET Registry is a national resource for studies investigating genetic and non-genetic influences on health and disease in middle age men, this enhances the value of the information collected from VET Registry members to the research community. The VET Registry has developed a general system of protocols for the collection and storage of biological specimens that assures confidentiality for all participants. The biological specimens currently in use are stored at the R&D Core Laboratory at the VA Puget Sound Health Care System (VAPSHCS) in Seattle, WA. The R&D Core Laboratory performs DNA extraction procedures and separates out DNA, plasma, and serum for testing and storage. It is important to note that Core Laboratory staff has absolutely no phenotypic (non-genetic) information about VET Registry members, as the lab is completely blinded to the identity, disease characteristics, and any other research data collected from VET Registry members. The Massachusetts Veterans Epidemiology Research and Information Center (MAVERIC) Core Laboratory is located at the VA Boston Health Care System in Boston, MA, and serves as the long-term storage site for the VET Registry Biospecimen Repository. Before a VET Registry member decides whether to participate in the Biospecimen Repository, the procedures, confidentiality safeguards, and potential risks are explained in great detail. To be able to accommodate the wishes of members, a so-called layered consent process is used which allows members to choose from several options with regard to how their biological specimen will be used in current or future research studies. Such options may include: 1) not having their samples used for any testing beyond the immediate goals of the study; 2) allowing for future testing of their samples restricted to the study for which they provided the sample; or 3) allowing unrestricted future research use of their samples. Members are informed that any future use of their samples would have to be approved by the VET Registry, in addition to an independent ethics committee that protects the rights and welfare of research subjects, this board is more commonly known as an Institutional Review Board or IRB. Confidentiality safeguards include assigning code numbers, as opposed to name or other personal information, on all biological specimens. Zygosity Testing The accuracy of DNA testing makes it the best method for determining zygosity, identical (monozygotic) versus fraternal (non-identical or dizygotic), in VET Registry twin members. The use of DNA for zygosity testing is only performed when both members of a twin pair agree to the testing. Other Genetic Testing for specific genes will not necessarily involve providing the participants with test results. | twin, male, adult, dna, plasma, serum, gene, genetic, health, disease, vietnam veteran |
is listed by: One Mind Biospecimen Bank Listing has parent organization: Vietnam Era Twin Registry |
Vietnam Era Twin Registry member (Vietnam War and Twin), Aging | Collaborators (members of the cohort)?: As the VET Registry is a national resource for studies investigating genetic and non-genetic influences on health and disease in middle age men, This enhances the value of the information collected from VET Registry members to the research community. | nlx_144390 | SCR_008808 | 2026-02-15 09:19:34 | 0 | |||||||
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Framingham Heart Study Resource Report Resource Website 100+ mentions |
Framingham Heart Study (RRID:SCR_008963) | FHS | material resource, biomaterial supply resource | A longitudinal, epidemiologic study to identify the common risk factors or characteristics that contribute to cardiovascular disease by following its development over a long period of time in a large group of participants who had not yet developed overt symptoms or suffered a heart attack or stroke. Since that time the FHS has studied three generations of participants resulting in biological specimens and data from nearly 15,000 participants. Since 1994, two groups from minority populations, including related individuals have been added to the FHS. FHS welcomes proposals from outside investigators for data and biospecimens. The researchers recruited 5,209 men and women between the ages of 30 and 62 from the town of Framingham, Massachusetts, and began the first round of extensive physical examinations and lifestyle interviews that they would later analyze for common patterns related to CVD development. Since 1948, the subjects have continued to return to the study every two years for a detailed medical history, physical examination, and laboratory tests, and in 1971, the Study enrolled a second generation - 5,124 of the original participants'''' adult children and their spouses - to participate in similar examinations. In 1994, the need to establish a new study reflecting a more diverse community of Framingham was recognized, and the first Omni cohort of the Framingham Heart Study was enrolled. In April 2002 the Study entered a new phase, the enrollment of a third generation of participants, the grandchildren of the Original Cohort. In 2003, a second group of Omni participants was enrolled. Over the years, careful monitoring of the Framingham Study population has led to the identification of major CVD risk factors, as well as valuable information on the effects of these factors such as blood pressure, blood triglyceride and cholesterol levels, age, gender, and psychosocial issues. Risk factors for other physiological conditions such as dementia have been and continue to be investigated. In addition, the relationships between physical traits and genetic patterns are being studied. FHS clinical and research data is stored in the dbGaP and NHLBI Repository repositories and may be accessed by application. Please check the following repositories before applying for data through FHS. Investigators seeking data that is not available through dbGaP or BioLINCC or seeking biological specimens may submit a proposal through the FHS web-based research application. The FHS data repository may be accessed through this FHS website, under the For Researchers link, then Description of Data, in order to determine if and how the desired data is stored. Proposals may involve the use of existing data, the collection of new data, either directly from participants or from previously collected samples, images, or other materials (e.g., medical records). The FHS Repository also has biological specimens available for genetic and non-genetic research proposals. Specimens include urine, blood and blood products, as well as DNA. | clinical study, longitudinal study, heart, cardiac, adult human, male, female, risk factor, blood pressure, blood triglyceride, cholesterol level, age, gender, psychosocial, dementia, physical trait, genetic trait, minority, clinical, genotype, phenotype, urine, blood, blood product, dna, FASEB list |
is listed by: One Mind Biospecimen Bank Listing is related to: NCBI database of Genotypes and Phenotypes (dbGap) is related to: Biologic Specimen and Data Repository Information Coordinating Center (BioLINCC) has parent organization: Boston University; Massachusetts; USA |
Cardiovascular disease, Normal, Aging | NHLBI Division of Prevention and Population Sciences | Public / Collaboration preferred: FHS welcomes proposals from outside investigators. Collaboration with FHS investigators is encouraged as it helps to maximize the scientific potential of the unique data. | nlx_151991 | SCR_008963 | 2026-02-15 09:19:55 | 155 | ||||||
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National Social Life Health and Aging Project (NSHAP) Resource Report Resource Website 1+ mentions |
National Social Life Health and Aging Project (NSHAP) (RRID:SCR_008950) | NSHAP | material resource, biomaterial supply resource | A longitudinal, population-based study of health and social factors, aiming to understand the well-being of older, community-dwelling Americans by examining the interactions among physical health and illness, medication use, cognitive function, emotional health, sensory function, health behaviors, social connectedness, sexuality, and relationship quality. NSHAP provides policy makers, health providers, and individuals with useful information and insights into these factors, particularly on social and intimate relationships. The study contributes to finding new ways to improve health as people age. In 2005 and 2006, NORC and Principal Investigators at the University of Chicago conducted the first wave of NSHAP, completing more than 3,000 interviews with a nationally representative sample of adults aged 57 to 85. In 2010 and 2011, nearly 3,400 interviews were completed for Wave 2 with these Wave 1 Respondents, Wave 1 Non-Interviewed Respondents, and their spouses or cohabiting romantic partners. The second wave of NSHAP is essential to understanding how social and biological characteristics change. NSHAP, by eliciting a variety of information from respondents over time, provides data that will allow researchers in a number of fields to examine how specific factors may or may not affect each other across the life course. For both waves, data collection included three measurements: in-home interviews, biomeasures, and leave-behind respondent-administered questionnaires. The face-to-face interviews and biomeasure collection took place in respondents'''' homes. NSHAP uses a national area probability sample of community residing adults born between 1920 and 1947 (aged 57 to 85 at the time of the Wave 1 interview), which includes an oversampling of African-Americans and Hispanics. The NSHAP sample is built on the foundation of the national household screening carried out by the Health and Retirement Study (HRS) in 2004. Through a collaborative agreement, HRS identified households for the NSHAP eligible population. A sample of 4,400 people was selected from the screened households. NSHAP made one selection per household. Ninety-two percent of the persons selected for the NSHAP interview were eligible. For Wave 2 in 2010 and 2011, NSHAP returned to Wave 1 Respondents and eligible non-interviewed respondents from Wave 1 (Wave 1 Non-Interviewed Respondents). NSHAP also extended the Wave 2 sample to include the cohabiting spouses and romantic partners of Wave 1 Respondents and Wave 1 Non-Interviewed Respondents. Partners were considered to be eligible to participate in NSHAP if they resided in the household with the Wave 1 Respondent/Wave 1 Non-Interviewed Respondent at the time of the Wave 2 interview and were at least 18 years of age. Wave I biomeasures: height; weight; waist circumference; blood pressure; smell; taste; vision; touch; respondent-administered vaginal swabs; oral mucosal transudate (OMT) for HIV-1 antibody screening; saliva; ����??get up and go����??; and blood spots. Technological advances in biomeasure collection methods have decreased respondent burden and increased ease of collection, storage, and yield of various biomeasures for the second wave of NSHAP. Wave II biomeasures: anthropometrics, including height, hip and waist circumference, and weight; cardiovascular function, including blood pressure, heart rate variability, and pulse; 2 of the 3 components of the short physical performance battery (SPPB) including chair stands and a timed walk; sensory function including smell; and actigraphy. In addition, we collect dried blood spots, microtainer blood, passive drool and salivettes, urine, and respondent-administered vaginal swabs, each of which are analyzed using multiple assays for a variety of measures and rationales. Furthermore, we assess respondents����?? cognition using the Montreal Cognitive Assessment (MoCA). Data Availability: NSHAP data made available to the public does not contain any identifiable respondent information and uses code numbers instead of names for all data. De-identified data from the 2005 and 2006 interviews are available to researchers through the National Archive of Computerized Data on Aging, located within Inter-University Consortium for Political and Social Research (ICPSR). Data from the Wave 2 interviews in 2010 and 2011 will be available in the summer of 2012. * Dates of Study: 2005-2006, 2010-2011 * Study Features: Biospecimens, Anthropometric Measures * Sample Size: ** Wave 1: 3,005 ** Wave 2: 3,377 Links: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/20541 | social life, health, man, woman, late adult human, middle adult human, longitudinal, social support, personal relationship, social, physical health, illness, cognitive function, emotional health, sensory function, social connectedness, sexuality, relationship quality, intimate relationship, biospecimen, anthropometric measure, interview, biomeasure, questionnaire, african-american, hispanic, minority, marriage, anxiety, attitude, body height, body weight, doctor visit, drug, ethnicity, family size, health attitude, health problem, health services utilization, health status, intimate partner, life satisfaction, medical evaluation, medical procedure, medication, menopause, mental health, morbidity, nutrition, quality of life, sexual activity, cohabitation, social network, demographic, prevention, cognition, well-being, survey, sleep, actigraphy, healthy aging, vaginal swab, blood spot, saliva, blood, urine |
is listed by: One Mind Biospecimen Bank Listing is listed by: Inter-university Consortium for Political and Social Research (ICPSR) is related to: Biomarker Network has parent organization: University of Chicago; Illinois; USA has parent organization: National Archive of Computerized Data on Aging (NACDA) |
Aging | Office of Research on Women's Health ; Office of AIDS Research ; National Opinion Research Center ; NIA R01-AG021487; NIA R37-AG030481; NIA R01-AG033903 |
PMID:19837963 | Public: Users must request and complete the NSHAP Restricted Data Use Agreement form. | nlx_151867 | http://gero.usc.edu/CBPH/network/resources/studies/nshap.shtml | SCR_008950 | National Social Life Health and Aging Project | 2026-02-15 09:19:55 | 4 | |||
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SAPALDIA Resource Report Resource Website 10+ mentions |
SAPALDIA (RRID:SCR_013416) | SAPALDIA | material resource, biomaterial supply resource | SAPALDIA (Swiss study on Air Pollution and Lung Disease in adults) is a multi-center study in eight geographic areas representing the range of environmental, meteorological and socio-demographic conditions of Switzerland, which studies the effects of air pollution on the respiratory and cardiovascular health in adults. Local centers are: Aarau, Basel, Davos, Geneva, Lugano, Montana, Payerne, and Wald. It was initiated in 1991 (SAPALDIA 1) with a follow-up assessment in 2002 (SAPALDIA 2). This study has allowed to assess 1) prevalence and development of major respiratory and allergic symptoms and diseases and the age-related decline in lung function, 2) the distribution of heart rate variability in the general population over age 50, 3) the association of these health indicators with individual long term exposure to air pollution, other toxic inhalants, life style and molecular factors. Another follow-up examination (SAPALDIA 3) started in January 2010. This study is well positioned to address crucial questions of air pollution epidemiology and important environmental health policy-related questions in the coming years. When SAPALDIA was initiated in 1991, 9''''651 subjects, aged 18 to 60 years, were recruited for a detailed computer-based interview and more than 90% of them underwent lung function and atopy testing. More than 7''''000 of the subjects had bronchial reactivity tested by a methacholine challenge. SAPALDIA shares parts of its study protocol with the European Community Respiratory Health Survey (ECRHS) with which it is linked through the study center of Basel. Since 1991 SAPALDIA has been carefully following address histories of its participants. In the 2002 follow-up, 8''''047 (83%) provided health information, 6''''528 persons underwent physical re-examination, and 6''''345 provided blood samples to establish an extensive blood, plasma, serum and DNA bank. In addition, 1''''813 subjects aged 50 or older participated in 24h-ECG Holter monitoring to provide detailed data on parameters of heart rate variability. With the inclusion of cardiovascular endpoints, SAPALDIA is one of the first studies examining effects from long-term exposure to air pollution on cardiovascular health parameters as well as mutual influence between the respiratory and the cardiovascular system. The SAPALDIA bio-bank has allowed scientific publications on the association between some genetic profiles (gene polymorphism) and the propensity to develop asthma, allergic diseases, or accelerated lung function decline with age. Ongoing studies are focusing on gene-environment interactions a crucial question to understand why some persons suffer more from the effect of air pollution than others. | blood, plasma, serum, dna, adult, clinical data, air pollution, respiratory system, cardiovascular system, lung disease, pulmonary medicine, environment, gene |
is listed by: One Mind Biospecimen Bank Listing is related to: Biobank Suisse |
Adult in geographical area of Switzerland: Aarau, Basel, Davos, Geneva, Lugano, Montana, Payerne, WaldAarau, Basel, Davos, Geneva, Lugano, Montana, Payerne, Wald, Aging | Swiss National Foundation for Scientific Research 33CS30_134276; Swiss National Foundation for Scientific Research 4026-28099; Swiss National Foundation for Scientific Research 3247BO-104283; Swiss National Foundation for Scientific Research 3247BO-104288; Swiss National Foundation for Scientific Research 3247BO-104284; Swiss National Foundation for Scientific Research 32-65896.01; Swiss National Foundation for Scientific Research 32-59302.99; Swiss National Foundation for Scientific Research 32-52720.97; Swiss National Foundation for Scientific Research 32-4253.94 |
nlx_143962 | SCR_013416 | SAPALDIA Cohort Study, Swiss study on Air Pollution and Lung Disease in adults, SAPALDIA Cohort | 2026-02-15 09:20:43 | 43 |
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