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http://snyderome.stanford.edu/
Data set generated by personal omics profiling of Dr. Michael Snyder at Stanford University. It combines genomic, transcriptomic, proteomic, metabolomic, and autoantibody profiles from a single individual over a 14 month period. The analysis revealed various medical risks, including type II diabetes. It also uncovered extensive, dynamic changes in diverse molecular components and biological pathways across healthy and diseased conditions.
Proper citation: iPOP (RRID:SCR_008991) Copy
A data set designed to provide a cross-sectional description of health, mental, and social status of the oldest-old segment of the elderly population in Israel, and to serve as a baseline for a multiple-stage research program to correlate demographic, health, and functional status with subsequent mortality, selected morbidity, and institutionalization. Study data are based on a sample of Jewish subjects aged 75+, alive and living in Israel on January 1, 1989, randomly selected from the National Population Register (NPR), a complete listing of the Israeli population maintained by the Ministry of the Interior. The NPR is updated on a routine basis with births, deaths, and in and out migration, and corrected by linkage with census data. The sample was stratified by age (five 5-year age groups: 75-79, 80-84, 85-89, 90-94, 95+), sex, and place of birth (Israel, Asia-Africa, Europe-America). One hundred subjects were randomly selected in each of the 30 strata. However, there were less than 100 individuals of each sex aged 95+ born in Israel, so all were selected for the sample. The total group included 2,891 individuals living both in the community and in institutions. A total of 1,820 (76%) of the 75-94 age group were interviewed during 1989-1992. An additional cognitive exam (Folstein) and a 24-hour dietary recall interview were added in the second round. Kibbutz Residents Sample The kibbutz is a social and economic unit based on equality among members, common property and work, collaborative consumption, and democracy in decision making. There are 250 kibbutzim in Israel, and their population constitutes about 3% of the country''s total population. All kibbutz residents in the country aged 85+, both members and parents, were selected for interviewing, of whom 80.4% (n=652) were interviewed. A matched sample aged 75-84 was selected, and 85.9% (n=674) were successfully interviewed. The original interview took approximately two hours to administer, and collected extensive information concerning the socio-demographic, physical, health, functioning, life events (including Holocaust), depression, mental status, and social network characteristics of the sample. The questionnaire used for kibbutz residents in the follow-up interview is identical to that utilized in the national random sample. Data Availability: Mortality data for both the national and kibbutz samples are available for analysis as a result of the linkage to the NPR file updated as of June 2000. The fieldwork for first follow up was completed as of September 1994 and for the second follow up as of December 2002. The data file of the three phases of the study is ready for analysis. * Dates of Study: 1989-1992 * Study Features: Longitudinal, International * Sample Size: 2,891
Proper citation: Cross-Sectional and Longitudinal Aging Study (RRID:SCR_008903) Copy
http://www.rand.org/labor/FLS/MHSS.html
A data set of the health and socioeconomic factors that affect the elderly in Matlab, a region of rural Bangladesh. The survey captures measurements and statistics such as adult survival, health status, health care utilization, resource flows between generations and the impact of community services and infrastructure on adult health care. Data was collected through surveys that touch on four topics: household and individual information; determinants of natural fertility; migration out of the community; and community and provider survey of healthcare and education infrastructure.
Proper citation: Matlab Health and Socio-Economic Survey (RRID:SCR_008942) Copy
A dataset of a longitudinal study of over 3,000 Mexican-Americans aged 65 or over living in five southwestern states. The objective is to describe the physical and mental health of the study group and link them to key social variables (e.g., social support, health behavior, acculturation, migration). To the extent possible, the study was modeled after the existing EPESE studies, especially the Duke EPESE, which included a large sample if African-Americans. Unlike the other EPESE studies that were restricted to small geographic areas, the Hispanic EPESE aimed at obtaining a representative sample of community-dwelling Mexican-American elderly residing in Texas, New Mexico, Arizona, Colorado, and California. Approximately 85% of Mexican-American elderly reside in these states and data were obtained that are generalizable to roughly 500,000 older people. The final sample of 3,050 subjects at baseline is comparable to those of the other EPESE studies. Data Availability: Waves I to IV are available through the National Archive of Computerized Data on Aging (NACDA), ICPSR. Also available through NACDA is the ����??Resource Book of the Hispanic Established Populations for the Epidemiologic Studies of the Elderly����?? which offers a thorough review of the data and its applications. All subjects aged 75 or older were interviewed for Wave V and 902 new subjects were added. Hemoglobin A1c test kits were provided to subjects who self-reported diabetes. Approximately 270 of the kits were returned for analyses. Wave V data are being validated and reviewed. A tentative timeline for the archiving of Wave V data is November 2006. Wave VI interviewing and data collection is scheduled to begin in Fall 2006. * Dates of Study: 1993-2006 * Study Features: Longitudinal, Minority oversamples, Anthropometric Measures * Sample Size: ** 1993-4: 3,050 (Wave I) ** 1995-6: 2,438 (Wave II) ** 1998-9: 1,980 (Wave III) ** 2000-1: 1,682 (Wave IV) ** 2004-5: 2,073 (Wave V) ** 2006-7: (Wave VI) Links: * ICPSR Wave 1: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/2851 * ICPSR Wave 2: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/3385 * ICPSR Wave 3: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/4102 * ICPSR Wave 4: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/4314 * ICPSR Wave 5: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/25041 * ICPSR Wave 6: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/29654
Proper citation: Longitudinal Study of Elderly Mexican American Health (RRID:SCR_008941) Copy
http://cnef.ehe.osu.edu/#sthash.WuGubz1D.dpuf
A dataset, 1970-2009, containing equivalently defined variables for the British Household Panel Study (BHPS), the Household Income and Labour Dynamics in Australia (HILDA), the Korea Labor and Income Panel Study (KLIPS) (new this year), the Panel Study of Income Dynamics (PSID), the Russia Longitudinal Monitoring Survey (RLMS-HSE) (new this year), the Swiss Household Panel (SHP), the Canadian Survey of Labour and Income Dynamics (SLID), and the German Socio-Economic Panel (SOEP). The data are designed to allow cross-national researchers not experienced in panel data analysis to access a simplified version of these panels, while providing experienced panel data users with guidelines for formulating equivalent variables across countries. The CNEF permit researchers to track yearly changes in the health and economic well-being of older people relative to younger people in the study countries. The equivalent file provides a set of constructed variables (for example pre- and post-government income and United States and international household equivalence weights) that are not directly available on the original surveys. Since the Cross-National Equivalent File 1970-2009 can be merged with the original surveys, PSID-CNEF users can easily incorporate these constructed variables into current analyses. The most recent release of the Equivalent File includes: * BHPS data from 1991 to 2005 on over 21,000 individuals and approximately 6,000 households. * GSOEP data from 1984 to 2007 on over 20,000 individuals and approximately 6,000 households in Germany. * HILDA data from 2001 to 2006 on over 19,000 individuals and 7,000 households. * PSID data from 1980 to 2005 on over 33,000 individuals and approximately 7,000 households. * SHP data from 1999 to 2006 on 12,900 individuals and 5,000 households. * SLID data from 1993 to 2006 on over 95,000 individuals and approximately 32,000 households. With one exception, the CNEF country data are available on CD-ROM from Cornell University for a fee. The Canadian SLID data are not distributed on the CD but are available to CNEF registered researchers through special arrangements with Statistics Canada. Complete instructions for obtaining CNEF data may be accessed on the project website. * Dates of Study: 1980-2007 * Study Features: International, Longitudinal * Sample Size: ** BHPS: 21,000+ ** PSID: 33,000+ ** SLID: 95,000+ ** GSOEP: 20,000+ ** HILDA: 19,000+ ** SHP: 12,900+ NACDA link: http://www.icpsr.umich.edu/icpsrweb/NACDA/studies/00145/detail
Proper citation: Cross-National Equivalent Files (RRID:SCR_008935) Copy
http://www.nitrc.org/projects/eegdataanimal
A collection of 32-channel data from 14 subjects (7 males, 7 females) acquired using the Neuroscan software. Subjects are performing a go-nogo categorization task and a go-no recognition task on natural photographs presented very briefly (20 ms). Each subject responded to a total of 2500 trials. Data is CZ referenced and is sampled at 1000 Hz (total data size is 4Gb; more details are given later).
Proper citation: EEG human categorization data (RRID:SCR_009468) Copy
http://www.icpsr.umich.edu/icpsrweb/NACDA/studies/09813/version/1
A longitudinal study which follows the cohort of current residents and discharged residents sampled from the 1985 National Nursing Home Survey (NNHS), thus permitting study of nursing home and hospital utilization over time. The study was conducted in three waves. To supplement the current and discharged resident components, the 1985 NNHS included a new component - the Next-of-Kin (NOK). The NOK, using a Computer Assisted Telephone Interviewing (CATI) system, was designed to collect information about current and former nursing home residents that is not generally available from patient records or other sources in the nursing home. The NNHSF obtains additional information on a portion of the residents for whom a Current Resident Questionnaire (CRQ) or a Discharged Resident Questionnaire (DRQ) was completed. In September 1994, the NNHSF Mortality Public Use Data Tape was released, covering the years 1984-1990. It contains the multiple cause-of-death information for 6,507 subjects from the NNHSF found to be deceased after linking and matching of files with the National Death Index. Information on the mortality tape includes the date of death, region of occurrence and residence, etc. All NNHSF tapes include a patient identification number common across files to allow linkage among them. Data Availability: Public Use data tapes for each wave and the mortality tape are available through the National Technical Information Office (NTIS), NACDA and the ICPSCR at the University of Michigan. The 1985 survey tape includes eight files: the facility questionnaire, nursing staff questionnaire, current resident questionnaire, discharged resident questionnaire, expense questionnaire, nursing staff sampling list, current resident sampling list, discharged resident sampling list. The next-of-kin questionnaire is available on a separate tape. * Dates of Study: 1987-1990 * Study Features: Longitudinal * Sample Size: ** 1987: 6,001 (Wave I) ** 1988: 3,868 (Wave II) ** 1990: 3,041 (Wave III) Links: * Wave I (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09813 * Wave II (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/09838 * Wave III (ICPSR): http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/06142
Proper citation: National Nursing Home Survey Follow-Up (RRID:SCR_008948) Copy
http://gero.usc.edu/CBPH/nujlsoa/index.htm
Longitudinal data set of a nationally representative sample of the population aged 65 and over in Japan, comparable to that collected in the US and other countries. The first two waves of data are now available to the international research community. The sample is refreshed with younger members at each wave so it remains representative of the population at each wave. The study was designed primarily to investigate health status of the Japanese elderly and changes in health status over time. An additional aim is to investigate the impact of long-term care insurance system on the use of services by the Japanese elderly and to investigate the relationship between co-residence and the use of long term care. While the focus of the survey is health and health service utilization, other topics relevant to the aging experience are included such as intergenerational exchange, living arrangements, caregiving, and labor force participation. The initial questionnaire was designed to be comparable to the (US) Longitudinal Study of Aging II (LSOAII), and to the Asset and Health Dynamics Among the Oldest Old (AHEAD, a pre-1924 birth cohort) sample of the Health and Retirement Study (HRS), which has now been merged with the HRS. The sample was selected using a multistage stratified sampling method to generate 340 primary sampling units (PSUs). The sample of individuals was selected for the most part by using the National Residents Registry System, considered to be universal and accurate because it is a legal requirement to report any move to local authorities within two weeks. From each of the 340 PSUs, 6-11 persons aged 65-74 were selected and 8-12 persons aged 75+ were sampled. The population 75+ was oversampled by a factor of 2. Weights have been developed for respondents to the first wave of the survey to reflect sampling probabilities. Weights for the second wave are under development. With these weights, the sample should be representative of the 65+ Japanese population. In fall 1999, 4,997 respondents aged 65+ were interviewed, 74.6 percent of the initial target. Twelve percent of responses were provided by proxies, because of physical or mental health problems. The second wave of data was collected in November 2001. The third wave was collected in November 2003. Questionnaire topics include family structure, and living arrangements; subjects'''' parents/spouse''''s parents/children; socioeconomic status; intergenerational exchange; health behaviors, chronic conditions, physical functioning; activities of daily living and instrumental activities of daily living; functioning in the community; mental health depression measures; vision and hearing; dental health; health care and other service utilization. A CD is available which include the codebook and data files for the first and second waves of the national sample. The third wave of data will be released at a later date. * Dates of Study: 1999-2003 * Study Features: Longitudinal, International * Sample Size: ** 4,997 Nov/Dec 1999 Wave 1 ** 3,992 Nov 2001 Wave 2 ** Nov 2003 Wave 3 Link: * ICPSR: http://www.icpsr.umich.edu/icpsrweb/ICPSR/studies/00156
Proper citation: Nihon University Japanese Longitudinal Study of Aging (RRID:SCR_008974) Copy
Collection of comprising deidentified health related data associated with patients who stayed in critical care units of Beth Israel Deaconess Medical Center between 2001 and 2012. Database includes information such as demographics, vital sign measurements made at bedside (~1 data point per hour), laboratory test results, procedures, medications, caregiver notes, imaging reports, and mortality (both in and out of hospital).
Proper citation: Medical Information Mart for Intensive Care-III (RRID:SCR_017384) Copy
https://brads.nichd.nih.gov/Home/
Access to data from the Division of Intramural Population Health Research (DIPHR) of the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) from completed studies, including biospecimens and ancillary data.
Proper citation: Biospecimen Repository Access and Data Sharing (RRID:SCR_017383) Copy
Collection of transcription factors annotated according to experimental and other evidence on their function as true DbTFs. Provides reference for both small scale experiments and genome scale studies. Curated compendium of specific DNA-binding RNA polymerase II transcription factors.
Proper citation: tfcheckpoint (RRID:SCR_023880) Copy
http://www.ifpcs.org/albinism/
Database of mutations associated with all major known forms of oculocutaneous and ocular albinism. The Albinism Database is part of the Locus Specific Mutation Databases of the Human Genome Variation Society and accepts the submission of new mutations. A link is provided for submission of new mutations. Columns in the database include: type of albinism, human locus, omim link, link to table of mutations and polymorphisms, and map of mutation locations.
Proper citation: Albinism database (RRID:SCR_000632) Copy
https://pmsiregistry.patientcrossroads.org/
International registry that consolidates information from individuals with Phelan-McDermid Syndrome into a single database, which will be utilized by researchers to understand Phelan-McDermid Syndrome better. In order to accelerate translational efforts (moving from basic laboratory research to meaningful health outcomes, such as therapies and treatments) related to Phelan-McDermid Syndrome, PMSF is funding the Phelan-McDermid Syndrome International Registry. The Registry is important for characterizing and understanding the syndrome better. Not only will the Registry provide valuable information for families and doctors to make the best care decisions possible, it will be important to help researchers decide what are the most important challenges to address. The Registry will also help scientists find out if there are any PMS patients who might be a good match for their research studies. Collecting information from PMS patients is very important, but protecting the privacy of people affected by PMS is also extremely important. In order to protect your privacy, Patient Crossroads (the company that designed the registry software) has designed many safeguards. Your child''s information will be de-identified so no one who looks at the data can identify you or your child. Your child''s information will be assigned a code. If a researcher is interested in learning more about your child, the researcher will ask the Patient Crossroads/PMSIR genetic counselor to contact you. A scientist will not be able to receive any identifying information about your child unless you give explicit consent for your child''s identity to be released to that researcher. BE PART OF OUR INTERNATIONAL REGISTRY The Registry will provide valuable information for families and doctors to make the best care decisions possible, and it will help researchers decide what are the most important challenges to address in PMS. Establishing the registry addresses two important scientific needs. First, scientists studying PMS need accurate, firsthand information to understand how PMS affects people. Second, scientists who are ready to start studies, such as those that test new treatments, will be able to access The Registry to identify people that may be eligible to participate in studies. In either case, your privacy is assured while the cause of research is advanced. While raw data about PMS will be available to scientists, they won''t have access to any identifying information about your child unless you agree to have your child''s identity released.
Proper citation: Phelan-McDermid Syndrome International Registry (RRID:SCR_004230) Copy
http://www.ataxia.org/research/patient-registry.aspx
A portal presenting the patient registries and databases of the National Ataxia Foundation. The registries include: Ataxia Patient Registry at CoRDS, Friedreich's Ataxia Research Alliance Patient Registry; the Fragile X Research Registry; Autosomal recessive spastic ataxia of Charlevoix-Saguenay ARSACS; and, Ataxia-Telangiectasia (A-T) Children's Project Family Data Base.
Proper citation: National Ataxia Foundation Patient Registries (RRID:SCR_005341) Copy
http://brainhealthregistry.org/
A website aimed at recruiting and assessing subjects for all types of neuroscience studies with the internet. The hope is to accelerate various types of observational studies and clinical trials, and also reduce costs. They are interested in having people, including healthy subjects of all ages, join the registry. Joining only takes a few minutes. The web-based project is designed to speed up cures for Alzheimer's, Parkinson's and other brain disorders. It uses online questionnaires and online neuropsychological tests (which are very much like online brain games).
Proper citation: Brain Health Registry (RRID:SCR_010230) Copy
https://nfregistry.patientcrossroads.org/
A patient registry to identify people with neurofibromatosis (NF) who are interested in participating in clinical trials, as well as determining the commonality of specific characteristics of NF. The NF Registry is committed to secure methodologies and pioneering research that will lead to improving the health and well-being of individuals and families affected by NF. This registry has been created to collect data on large numbers of people with NF. This has never existed before and will help: * Identify people who may be eligible for clinical trials or other research studies being conducted in the field of NF. New clinical trials are launched each year yet challenges identifying participants too often mean that these studies finish late or never really get started. Today, 80 percent of trials fail to recruit enough volunteers within planned timelines. Under enrollment is one of the most significant problems facing NF drug development. Together, we can solve it. * Determine the commonality of specific NF characteristics. This will help researchers and doctors devise better ways to care for people with NF If you or your child has been diagnosed with neurofibromatosis (NF) please join the NF Registry today. It''s quick, it''s easy, and it matters. The key to treatments lies within you researchers can''t deliver treatments without committed volunteers.
Proper citation: NF Registry (RRID:SCR_006277) Copy
A database housing longitudinal relational research data from over 4,000 research subjects. The database includes the following types of data: physical and neurological exam findings, neurocognitive test scores, personal and family history of dementia, personal demographic genotypes (APOE, HLA), age at service evaluations, age at onset, age at death, clinical diagnosis, neuropathology diagnosis, tissue inventory information (when available), health status, medications, laboratory tests, and MRI data.
Proper citation: Layton Center Clinical Data Resources (RRID:SCR_008822) Copy
The HIV Brain Sequence Database (HIVBrainSeqDB) is a public database of HIV envelope sequences, directly sequenced from brain and other tissues from the same patients. For inclusion in the database, sequences must: (i) be deposited in Genbank; (ii) include some portion of the HIV env region; (iii) be clonal, amplified directly from tissue; and (iv) be sampled from the brain, or sampled from a patient for which the database already contains brain sequence. Sequences are annotated with clinical data including viral load, CD4 count, antiretroviral status, neurocognitive impairment, and neuropathological diagnosis, all curated from the original publication. Tissue source is coded using an anatomical ontology, the Foundational Model of Anatomy, to capture the maximum level of detail available, while maintaining ontological relationships between tissues and their subparts. 44 tissue types are represented within the database, grouped into 4 categories: (i) brain, brainstem, and spinal cord; (ii) meninges, choroid plexus, and CSF; (iii) blood and lymphoid; and (iv) other (bone marrow, colon, lung, liver, etc). Currently, the database contains 2517 envelope sequences from 90 patients, obtained from 22 published studies. 1272 sequences are from brain; the remaining 1245 are from blood, lymph node, spleen, bone marrow, colon, lung and other non-brain tissues. The database interface utilizes a faceted interface, allowing real-time combination of multiple search parameters to assemble a meta-dataset, which can be downloaded for further analysis. This online resource will greatly facilitate analysis of the genetic aspects of HIV macrophage tropism, HIV compartmentalization and evolution within the brain and other tissue reservoirs, and the relationship of these findings to HIV-associated neurological disorders and other clinical consequences of HIV infection.
Proper citation: HIV Brain Sequence Database (RRID:SCR_008819) Copy
http://www.demogr.mpg.de/databases/ktdb/
A database that includes data on death counts and population counts classified by sex, age, year of birth, and calendar year for more than 30 countries. This database was established for estimating the death rates at the highest ages (above age 80). The core set of data in the database was assembled, tested for quality, and converted into cohort mortality histories by V��in�� Kannisto, the former United Nations advisor on demographic and social statistics. Comparable materials on England and Wales, was made available by A. Roger Thatcher, the former Director of the Office of Population Censuses and Surveys and Registrar-General of England and Wales (Kannisto, 1994). The Kannisto-Thatcher database was computerized under the supervision of James W. Vaupel at the Aging Research Unit of the Centre for Health and Social Policy at Odense University Medical School in 1993. Currently, the database is maintained by the Max Planck Institute for Demographic Research, Germany.
Proper citation: Kannisto-Thatcher Database on Old Age Mortality (RRID:SCR_008936) Copy
Database to advance the availability and use of public health data for science and policy making that includes data from all weekly notifiable disease reports for the United States dating back to 1888. Additional U.S. and international data will be released twice yearly.
Proper citation: Project Tycho (RRID:SCR_010489) Copy
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