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http://www.opwdd.ny.gov/institute-for-basic-research/home

A research arm of the New York State Office for People with Developmental Disabilities (OPWDD), which conducts basic and clinical research into the causes, treatment, and prevention of intellectual disabilities and other developmental disabilities. The goals of the IBR's research, services and education program are designed to provide prevention, earlier detection, and improved treatment of intellectual disabilities and other developmental disabilities. This research program has a total of 46 laboratories over 7 departments. These programs include the George A. Jervis Clinic (a tertiary-level diagnostic and research clinic), the Specialty Clinical Laboratories (conduct specialty testing for genetic, metabolic, neurodegenerative disorders), and the Comprehensive Genetic Disease Program at Richmond County (provides genetics and genetic counseling services). This institute provides educational activities in the graduate studies program, and the Programs in Developmental Neuroscience and Developmental Disabilities (PDNDD). The PDNDD collaborates with the faculty from the City University of New York and the State University of New York. The IBR staff regularly conducts public education workshops and professional seminars about developmental disabilities.

Proper citation: Institute for Basic Research in Developmental Disabilities (RRID:SCR_008806) Copy   

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http://brainbank.med.miami.edu/

A biomaterial supply resource which collects and disseminates over 1500 brains and links tissue specimens to patient data. The Brain Endowment Bank distributes brain tissue specimens to scientists worldwide who are investigating neurodegenerative and neuropsychiatric diseases, as well as to scientists involved in ongoing studies on the affects of aging. Its overall objective is to support basic and clinical research activities by providing a systematic method for obtaining detailed pre-mortem clinical information, developing procedures for optimizing brain autopsies, cryopreserving neuropathological specimens, and obtaining neuropathological diagnoses after death.

Proper citation: UM Brain Endowment Bank (RRID:SCR_008721) Copy   

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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   

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http://www.mghmind.org

An institute whose mission is to translate laboratory discoveries into prevention, treatment and cures for Alzheimer's, ALS, Huntington's, Parkinson's and other neurodegenerative diseases. MIND seeks to accelerate therapies that lessen the toll of disease on patients and families. Researchers of the institute collaborate, strategize, and share technology to find treatment for these diseases. As promising leads are developed in one area, they are tested in the other neurodegenerative disorders.

Proper citation: MassGeneral Institute for Neurodegenerative Disease (RRID:SCR_008746) Copy   

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https://www.uab.edu/medicine/alzheimers/

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.

Proper citation: UAB Alzheimer's Disease Center (RRID:SCR_004305) Copy   

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http://fcon_1000.projects.nitrc.org/indi/pro/eNKI_RS_TRT/FrontPage.html

A test-retest dataset to assess the reliability of multiband resting state fMRI (R-fMRI) and diffusion tensor imaging (DTI) scans prior to launch of the Enhanced Nathan Kline Institute - Rockland Sample (NKI-RS). The dataset is primarily composed of individuals from the initial NKI-RS - for these individuals psychiatric assessment information is available and included (participants were not excluded due to history of illness. In addition to R-fMRI and DTI, they included: 1) simple visual checkerboard stimulation fMRI scans to allow for assessment of traditional fMRI data quality metrics (e.g., contrast-to-noise ratio), 2) breath holding data to enable assessment of regional differences in vascular responsiveness, and 3) eye movement calibration scans to enable the assessment of eye-movement related artifacts which may be particularly troublesome for multiband sequences since several slices are acquired simultaneously.

Proper citation: NKI-RS Multiband Imaging Test-Retest Pilot Dataset (RRID:SCR_010460) Copy   

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http://fcon_1000.projects.nitrc.org/indi/enhanced/

Dataset of 1000 characterized community-ascertained participants using state-of-the-art multiband imaging-based resting state fMRI (R-fMRI) and diffusion tensor imaging (DTI), genetics, and a deep phenotyping protocol from a large cross-sectional sample of brain development, maturation and aging (ages 6 - 85 yrs). The Center for Magnetic Resonance Research (CMRR), University of Minnesota, provided the NKI-RS effort with the latest version of the Multiband EPI sequence (Xu et al. 2012) and associated image reconstruction algorithms, enabling the acquisition of state-of-the-art imaging datasets for this large-scale imaging effort. The enhanced NKI-RS expands upon the phenotypic protocol of the original NKI-RS and captures a broad range of behavioral and cognitive phenomenology relevant to psychiatric health and illness. The validity and value of assessments were evaluated by consulting leaders in the field of psychiatric phenotyping.

Proper citation: NKI-RS Enhanced Sample (RRID:SCR_010461) Copy   

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http://biorxiv.org/content/early/2013/11/27/000455

A subset of the CARMEN repository, a curated set of data and code of multielectrode array recordings of spontaneous activity in developing mouse and ferret retina. The data have been annotated with minimal metadata and converted into HDF5 (Hierarchical data format, version 5) including the essential features of the recordings, such as developmental age, and genotype. All code and tools used in the analyses are also fully available for reuse, giving the ability to regenerate each figure and table and know exactly how the results were calculated, adding confidence in the research output and allowing others to easily build upon previous work. The addition of published data to the repository is encouraged.

Proper citation: Retinal wave repository (RRID:SCR_010462) Copy   

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http://globocan.iarc.fr/Default.aspx

The aim of the project is to provide contemporary estimates of the incidence of, mortality and prevalence from major types of cancer, at national level, for 184 countries of the world. The GLOBOCAN estimates are presented for 2012, separately for each sex. 1-, 3- and 5-year prevalence data are available for the adult population only (ages 15 and over). Please note that: These estimates are based on the most recent data available at IARC and on information publically available on the Internet, but more recent figures may be available directly from local sources. Because the sources of data are continuously improving in quality and extent, estimates may not be truly comparable overtime and care should be taken when comparing these estimates with those published earlier. The observed differences may be the result of a change in the methodology and should not be interpreted as a time trend effect.

Proper citation: GLOBOCAN (RRID:SCR_012750) Copy   

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http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06718

Data set on the prevalence of self-care behaviors by non-institutionalized older adults. Personal interviews were conducted with 3,485 individuals 65 years of age and older, with oversampling of the oldest old. Questions were asked about the type and extent of self-care behaviors for activities of daily living, management of chronic conditions (through self-care activities, equipment use, and environmental modifications), medical self-care for acute conditions, health promotion/disease preventions, social support, health service utilization, and socio-demographic/economic status. A follow-up study by telephone was conducted in 1994 to continue examination of subjects. Many of the same questions from the baseline were asked, along with questions regarding change in health status since baseline and nursing home visits. For subjects who had been institutionalized since baseline (Part 2), information was gathered (by proxy) regarding demographic status, living arrangements prior to institutionalization, and reasons for institutionalization. For subjects who had died since baseline (Part 3), information was again gathered through interviews with proxies. Questions covered nursing home admissions and date and place of death. In both waves, a proxy was substituted if the subject was hospitalized (or institutionalized since baseline), too ill, cognitively not able to respond, or deceased. Survey data were linked to Medicare/Medicaid health utilization records. The baseline data are archived at NACDA as ICPSR Study No. 6718, and the followup data are archived as ICPSR Study No. 2592 and linkable to the baseline data. * Dates of Study: 1990-1994 * Study Features: Longitudinal * Sample Size: ** 1990-1: 3,485 (Baseline) ** 1994: 2,601 (Followup) Links: * 1990-1991 Baseline ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06718 * 1994 Follow-up ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/02592

Proper citation: National Survey of Self-Care and Aging (RRID:SCR_013456) Copy   

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http://www.ssc.wisc.edu/nsfh/home.htm

A national sample survey dataset covering a wide variety of issues on American family life beginning in 1987-88 and at two subsequent timepoints1992-93 and 2001-03. Topics covered included detailed household composition, family background, adult family transitions, couple interactions, parent-child interactions, education and work, health, economic and psychological well-being, and family attitudes. The first wave interviewed 13,017 respondents, including a main cross-section sample of 9,643 persons aged 19 and over plus an oversample of minorities and households containing single-parent families, step-families, recently married couples, and cohabiting couples. In each household, a randomly selected adult was interviewed. In addition, a shorter, self-administered questionnaire was filled out by the spouse or cohabiting partner of the primary respondent. Interviews averaged about 100 minutes, although interview length varied considerably with the complexity of the respondent''s family history. In 1992-94, an in-person interview was conducted of all surviving members of the original sample, the current spouse or cohabiting partner, and with the baseline spouse or partner in cases where the relationship had ended. Telephone interviews were conducted with focal children who were aged 5-12 and 13-18 at baseline. Short proxy interviews were conducted with a surviving spouse or other relative in cases where the original respondent died or was too ill to interview. A telephone interview was conducted with one randomly selected parent of the main respondent. In 2001-03, telephone interviews were conducted with: Surviving members of the original respondents who had a focal child age 5 or over at baseline; the baseline spouse/partner of these original respondents, whether or not the couple was still together; the focal children who were in the household and aged 5-18 at baselinemost of whom were interviewed at wave 2; and all other original respondents age 45 or older in 2000, and their baseline spouse/partner. Oversamples: Blacks, 9.2%; Mexican-Americans, 2.4%; Puerto Ricans, 0.7% * Dates of Study: 1987-2003 * Study Features: Longitudinal, Minority Oversampling * Sample Size (original respondents): ** Wave I (1987-88): 13,017 ** Wave II (1992-93): 10,007 ** Wave III (2001-03): 8,990 Links: * Wave I (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06041 * Wave II (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06906 * Wave III (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00171

Proper citation: National Survey of Families and Households (RRID:SCR_013388) Copy   

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http://www.diw.de/en/soep

A wide-ranging representative longitudinal study of private households that permits researchers to track yearly changes in the health and economic well-being of older people relative to younger people in Germany from 1984 to the present. Every year, there were nearly 11,000 households, and more than 20,000 persons sampled by the fieldwork organization TNS Infratest Sozialforschung. The data provide information on all household members, consisting of Germans living in the Old and New German States, Foreigners, and recent Immigrants to Germany. The Panel was started in 1984. Some of the many topics include household composition, occupational biographies, employment, earnings, health and satisfaction indicators. In addition to standard demographic information, the GSOEP questionnaire also contains objective measuresuse of time, use of earnings, income, benefit payments, health, etc. and subjective measures - level of satisfaction with various aspects of life, hopes and fears, political involvement, etc. of the German population. The first wave, collected in 1984 in the western states of Germany, contains 5,921 households in two randomly sampled sub-groups: 1) German Sub-Sample: people in private households where the head of household was not of Turkish, Greek, Yugoslavian, Spanish, or Italian nationality; 2) Foreign Sub-Sample: people in private households where the head of household was of Turkish, Greek, Yugoslavian, Spanish, or Italian nationality. In each year since 1984, the GSOEP has attempted to re-interview original sample members unless they leave the country. A major expansion of the GSOEP was necessitated by German reunification. In June 1990, the GSOEP fielded a first wave of the eastern states of Germany. This sub-sample includes individuals in private households where the head of household was a citizen of the German Democratic Republic. The first wave contains 2,179 households. In 1994 and 1995, the GSOEP added a sample of immigrants to the western states of Germany from 522 households who arrived after 1984, which in 2006 included 360 households and 684 respondents. In 1998 a new refreshment sample of 1,067 households was selected from the population of private households. In 2000 a sample was drawn using essentially similar selection rules as the original German sub-sample and the 1998 refreshment sample with some modifications. The 2000 sample includes 6,052 households covering 10,890 individuals. Finally, in 2002, an overrepresentation of high-income households was added with 2,671 respondents from 1,224 households, of which 1,801 individuals (689 households) were still included in the year 2006. Data Availability: The data are available to researchers in Germany and abroad in SPSS, SAS, TDA, STATA, and ASCII format for immediate use. Extensive documentation in English and German is available online. The SOEP data are available in German and English, alone or in combination with data from other international panel surveys (e.g., the Cross-National Equivalent Files which contain panel data from Canada, Germany, and the United States). The public use file of the SOEP with anonymous microdata is provided free of charge (plus shipping costs) to universities and research centers. The individual SOEP datasets cannot be downloaded from the DIW Web site due to data protection regulations. Use of the data is subject to special regulations, and data privacy laws necessitate the signing of a data transfer contract with the DIW. The English Language Public Use Version of the GSOEP is distributed and administered by the Department of Policy Analysis and Management, Cornell University. The data are available on CD-ROM from Cornell for a fee. Full instructions for accessing GSOEP data may be accessed on the project website, http://www.human.cornell.edu/che/PAM/Research/Centers-Programs/German-Panel/cnef.cfm * Dates of Study: 1984-present * Study Features: Longitudinal, International * Sample Size: ** 1984: 12,290 (GSOEP West) ** 1990: 4,453 (GSOEP East) ** 2000: 20,000+ Links: * Cornell Project Website: http://www.human.cornell.edu/che/PAM/Research/Centers-Programs/German-Panel/cnef.cfm * GSOEP ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00131

Proper citation: German Socio-Economic Panel (RRID:SCR_013140) Copy   

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http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04219

A collection of data of an epidemiological study of chronic disease in the oldest old based on information collected from Kaiser Permanente facilities in Northern California (KPNC). The initial sample was drawn from the Kaiser''s active membership lists for the years 1971 and 1980. The sample was restricted to members that had a Multiphasic Health Checkup examination (MHC) within 7 years of the baseline date. The sample was stratified to attain equal numbers of observations (1,000 in each) in three sex-age cells for each cohort: 65-69, 70-79, and 80+. Each cohort was followed for 9 years through existing medical records and computerized hospitalization tapes. Mortality data was collected by matching the sampled data with state Vital Statistics data for an additional 3 years for a total follow-up time of 12 years. Part 1 of the data collections consists of Master Records, which includes information from the morbidity review, in which over 35 chronic conditions or diagnoses were abstracted from the member charts, as well as detailed diagnostic criteria for the major conditions. A prevalence review was done, which included the 4 years prior to the baseline date for these same conditions. Recurrent disease is included for the following conditions: cancers, myocardial infarction, and various forms of strokes. A detailed account of outpatient health services use, and data from the multiphasic health checkup, which was administered to each participant during the nine yearly follow-ups, are also included in the Master Records file. The labs and procedures included: chemistry, hematology, urinalysis, bacteriology, chest x-ray, GI x-ray, ultrasound, CT/MRI, mammogram, resting ECG, treadmill ECG, echocardiograms, nuclear scans, outpatient breast biopsy, cystoscopy, and cataract surgery. Inpatient utilization includes all hospitalizations, procedures done during a hospital stay, length of stay, admitting/discharge diagnosis. Part 2, Hospitalization, contains records of causes and dates of hospitalizations and discharges and nursing home admissions. There is also a section on incomplete reviews and the reasons for them. Demographic information and some lifestyle information from the multiphasic health checkup (e.g., smoking, alcohol, and Body Mass Index) are also in this file. Data Availability: These datasets have been documented extensively and are available from the ICPSR (Study No. 4219). * Dates of Study: 1971-1992 * Study Features: Longitudinal, Anthropometric Measures * Sample Size: ** 1971 cohort: 2,877 (baseline) ** 1980 cohort: 3,113 (baseline) ** 1971 & 1980: 5,990 ** Hospitalization: 14,730 Links: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/04219 * HSRR: http://wwwcf.nlm.nih.gov/hsrr_search/view_hsrr_record_table.cfm?TITLE_ID=381&PROGRAM_CAME=toc_with_source2.cfm

Proper citation: Epidemiology of Chronic Disease in the Oldest Old (RRID:SCR_013466) 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://ki.se/en/research/the-swedish-twin-registry-1

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.

Proper citation: Swedish Twin Registry (RRID:SCR_008883) Copy   

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http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/03255

Data set that looked at religion, self-rated health, depression, and psychological well-being in a sample of older Blacks and older Whites (aged 65 and over) within the United States. Questions were asked regarding religious status, activities, and beliefs among those who currently practice the Christian faith, those who used to be Christian but are not now, and those who have never been associated with any religion during their lifetimes. Demographic variables include age, race, sex, education, and income. Wave II was collected in 2004 and reinterviewed 1,024 respondents. There were 75 respondents who refused to participate, 112 who could not be located, 70 that were too ill for participation, 11 who had moved to nursing homes and 208 were deceased. * Dates of Study: 2001- 2004 * Study Features: Longitudinal, Minority Oversample * Sample Size: 1,500

Proper citation: Religion Aging and Health Survey (RRID:SCR_003625) 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://cph.georgetown.edu/taiwan.html

Data sets of information regarding the health and well-being of older persons in Taiwan (from 2000 and 2006), in particular the relationship between life challenges and mental and physical health, the impact of social environment on the health and well-being of the elderly, and biological markers of health and stress. The study collected self-reports of physical, psychological, and social well-being, plus extensive clinical data based on medical examinations and laboratory analyses. Examination of health outcomes included chronic illnesses, functional status, psychological well-being, and cognitive function. Questions regarding life challenges focused on perceived stress, economic difficulties, security and safety, and the consequences of a major earthquake. Biological markers were used to identify cardiovascular risk factors, metabolic process measures, immune-system activity, the hypothalamic-pituitary adrenal axis, and sympathetic nervous system activity. The study design consists of face-to-face interviews with participants drawn from a random sub-sample of participants from 27 PSUs from the 1999 Survey of Health and Living Status of the Middle Aged and Elderly in Taiwan. Hospital visits and blood and urine specimens also were collected. A second wave of SEBAS was conducted in 2006 using a similar protocol to SEBAS 2000, but with the addition of performance assessments conducted by the interviewers at the end of the home interview. * Dates of Study: -2000, 2006 * Study Features: Longitudinal, International, Anthropometric Measures * Sample Size: 27 PSUs

Proper citation: Social Environment and Biomarkers of Aging Study in Taiwan (RRID:SCR_003704) Copy   

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http://www.lifetable.de/

A collection of population life tables covering a multitude of countries and many years. Most of the HLD life tables are life tables for national populations, which have been officially published by national statistical offices. Some of the HLD life tables refer to certain regional or ethnic sub-populations within countries. Parts of the HLD life tables are non-official life tables produced by researchers. Life tables describe the extent to which a generation of people (i.e. life table cohort) dies off with age. Life tables are the most ancient and important tool in demography. They are widely used for descriptive and analytical purposes in demography, public health, epidemiology, population geography, biology and many other branches of science. HLD includes the following types of data: * complete life tables in text format; * abridged life tables in text format; * references to statistical publications and other data sources; * scanned copies of the original life tables as they were published. Three scientific institutions are jointly developing the HLD: the Max Planck Institute for Demographic Research (MPIDR) in Rostock, Germany, the Department of Demography at the University of California at Berkeley, USA and the Institut national d''��tudes d��mographiques (INED) in Paris, France. The MPIDR is responsible for maintaining the database.

Proper citation: Human Life-Table Database (RRID:SCR_006248) Copy   

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http://www.physionet.org/physiobank/database/nesfdb/

Data set of postural sway measurements for 15 healthy young (mean age 23, standard deviation 2), and 12 healthy elderly (mean age 73, standard deviation 3) volunteers. Each subject''s postural sway was recorded during a test of 10 minutes for the young subjects, or 5 minutes for the elderly subjects, in all cases with a 2-minute seated break midway through the test. Each test was divided into 30-second trials, and each file of the database contains data for one of these 30-second trials.

Proper citation: Noise Enhancement of Sensorimotor Function (RRID:SCR_006913) Copy   

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