National Institutes of Health

12/31/1969

TITLE: National Longitudinal Mortality Study-National Death Index Record Linkage

ACRONYM: NLMS

AGENCY/PROGRAM: National Cancer Institute, National Institutes of Health.

DESCRIPTION: In a collaboration begun in 1999 with the Census Bureau and other federal agencies, NCI is working to overcome the limited availability of sociodemographic information on death certificates and to obtain self-reported racial/ethnic data. This has involved the extension and expansion of the U.S. National Longitudinal Mortality Study (NLMS) and linkage to the National Death Index (NDI). Other sponsoring agencies are the National Heart, Lung, and Blood Institute; the National Institute on Aging; and the National Center for Health Statistics. Expected to add data on 60,000 cancer deaths, this linkage will allow an in-depth analysis of racial/ethnic, socioeconomic and occupational differentials in cancer mortality for the major cancer sites. An important NLMS milestone was achieved in mid-June of 2001 with the completion of the match of approximately 2.4 million NLMS records to the National Death Index (NDI) under secured conditions. The successful completion of this match marks the beginning of the approximately one-year processing effort necessary to identify and verify the match and update NLMS records with valid mortality follow-up information. Slightly more than 160,000 additional cases of mortality are expected to be added to the NLMS mortality count giving a total of approximately 260,000 deaths out of the 2.4 million NLMS records. The mortality follow-up period for these data is from 1979 to 1998. Research projects built on the NLMS include a database containing smoking information collected in the 1990s containing 173,704 records with valid responses to "smoking" questions, which will be linked to the NLMS mortality data.

RACE/ETHNICITY: Data are available for major census racial/ethnic groups, such as whites, blacks/African Americans, American Indians/Alaska Natives, Chinese, Japanese, Filipino, Asian Indians, Vietnamese, Koreans, Hawaiians, and other Asian/Pacific Islanders, Mexicans, Puerto Ricans, Cubans, Central and South Americans, and other Hispanics.

DATA LIMITATIONS: Data are available for analysis without identifiers. Data are limited only to civilian, noninstitutionalized population of the United States. Reliable mortality information may not be obtainable for small geographic areas.

STATUS: Ongoing data collection. The 10-year mortality follow-up to the NLMS records was completed in 1995. The data for a 20-year mortality follow-up from 1979 to 1998 were obtained in 2002, and the final matched mortality data for Phase I will be available for analysis in 2003. The Phase II expansion of the NLMS data is planned to begin in 2003, and the data collection would continue through 2008.

HOW TO ACCESS DATA: A public-use file/CD-ROM containing a 9-year mortality follow-up is available by contacting Dr. Paul Sorlie, National Heart, Lung, and Blood Institute, 6701 Rockledge Drive, MSC 7934, Bethesda, MD 20892 (telephone: 301-435-0456; e-mail: sorliep@nhlbi.nih.gov). Two NIH Databooks containing detailed data are also available through the NHLBI office.

Researchers wishing access to the complete database should contact the Principal Investigators or Project Officers from the Sponsoring Institutes/Agencies to obtain approval.

WEB SITE: Information about the public use data can be obtained from the web site http://www.nhlbi.nih.gov/resources/deca/descriptions/nlms.htm.

CONTACT PERSON: Gopal K. Singh, Ph.D., National Cancer Institute, Division of Cancer Control & Population Sciences, 6116 Executive Blvd, Suite 504, Bethesda, MD 20892-8316. Telephone: 301-402-5331; Fax: 301-496-9949; E-mail: gopal_singh@nih.gov.


TITLE: Public-Use Data on Cancer Incidence and Survival from the Surveillance, Epidemiology and End Results (SEER) Program of the National Cancer Institute

ACRONYM: SEER Public-Use CD-ROM

AGENCY/PROGRAM: National Institutes of Health

DESCRIPTION: One of the major roles of the National Cancer Institute (NCI) is to collect, analyze and disseminate data useful in the prevention, diagnosis, and treatment of cancer. In support of this mission, the NCI collects information on cancer incidence and survival through the Surveillance, Epidemiology and End Results (SEER) program. The SEER program is composed of a set of population-based cancer registries currently covering about 14% of the total United States population. Each registry abstracts records from hospitals, laboratories, radiotherapy units, nursing homes and other health services units which provide cancer diagnostic services to ensure complete ascertainment of cases. The cancer data are submitted annually to the National Cancer Institute for analysis and for the production of a public-use data base on CD-ROM. The currently available data base contains cases diagnosed from January 1973 through December 1999 and will be updated to include 2000 diagnoses in the Spring of 2003. Several variables describing the tumor (e.g., extent of disease, histology), surgical or radiation therapy, and basic patient demographics (e.g., age, race/ethnicity, sex, marital status, and county of residence at the time of diagnosis) are available for each cancer diagnosis. Patient identifying information, however, is not included. A statistical analysis program, called SEER*Stat, is included with the public-use data base. The SEER*Stat system provides the user with an efficient and flexible tool with which to produce cancer frequencies, rates, and survival statistics. This system is a 32-bit Microsoft Windows (95, 98, NT, 2000, etc.) application which provides the functionality and intuitive interface commonly found in a Windows environment. Socioeconomic data are not routinely available from cancer patient medical records, so these data are not available on the SEER data base.

 

RACE/ETHNICITY: Although the SEER registries cover 14% of the total U.S. population, the coverage areas were selected in such a way as to include significant numbers of a variety of specific racial/ethnic groups. Based on 1990 census populations, SEER areas cover about 26% of the total U.S. American Indian/Alaska Native population (100% of American Indian/Alaska Natives in New Mexico), 18% of the Asian Indian population, 12% of the Black population, 43% of the Chinese population, 49% of the Filipino population, 77% of the Hawaiian population, 25% of the Hispanic population, 60% of the Japanese population, 34% of the Korean population, and 31% of the Vietnamese population. Out of a total of over 2.2 million cancer diagnoses in the SEER public-use data base through 1999, there are about 2.4 million cases among Whites, 240,000 among Blacks, 42,000 among Japanese, 33,000 among Chinese, 30,000 among Filipinos, 13,000 among Hawaiians, 7,000 among American Indian/Alaska Natives, 6,000 among Koreans, and 4,000 among Vietnamese. Data on the race (Black; White; American Indian/Alaska Native; Chinese; Japanese; Filipino; and Hawaiian) and Hispanic ethnicity of newly diagnosed cancer patients have regularly been reported to the National Cancer Institute by the SEER registries since the beginning of the program in 1973. In 1988, race codes were added to identify Korean, Asian Indian, Pakistani, Vietnamese, Laotian, Hmong, and Kampuchean cases. In 1991, codes were added to identify specific Pacific Islander groups (including Chamorran, Tahitian, Samoan, Tongan, Fiji Islander, and New Guinean). In 1994, a race code for Thai was added. The race/ethnicity information is abstracted from medical records, as are all other data.

STATUS: The SEER Public-Use CD-ROM with cancer diagnoses from 1973 through 1999 is currently available.

HOW TO ACCESS DATA: The data are stored on CD-ROM which may be accessed via personal computer. Public access may also be obtained through a client-server configuration. A high speed Internet connection is recommended for this configuration.

WEB SITE: Selected tabulations and reports of the data are available via the Internet at http://www.seer.cancer.gov/. Click on "Cancer Statistics."

CONTACT PERSON: The SEER Program
(301) 496-8510 / fax (301) 496-9949
seerweb@imsweb.com.


TITLE: Tobacco Use Supplement to the Current Population Survey.

ACRONYM: TUS-CPS.

AGENCY/PROGRAM: National Cancer Institute, National Institutes of Health. Beginning in 2001, Office on Smoking and Health, Centers for Disease Control and Prevention (CDC) has been co-sponsoring this survey with the National Cancer Institute (NCI).

DESCRIPTION: The Tobacco Use Supplement to the Current Population Survey (TUS-CPS) is a survey of tobacco use that has been administered as part of the US Census Bureau's and the Bureau of Labor Statistic's Current Population Survey. From 1992-2000 the TUS-CPS was sponsored by the National Cancer Institute. The TUS-CPS is a key source of national and state level data on smoking and other tobacco use in the US household population because it uses a large, nationally representative sample that contains information on about 240,000 individuals within a given survey period.

Over the next ten years, NCI and co-sponsor CDC plans to conduct the TUS-CPS bi or tri-annually, alternating between a Core questionnaire intended for monitoring purposes (similar to the questionnaire used throughout the 1990s) and more specific Special Topics questionnaires that target tobacco-related issues of particular interest to researchers. In 2001-02, a Core TUS questionnaire has been fielded, using the same instrument as that administered in 1998-99. In 2003, a Special Topics questionnaire oriented toward tobacco cessation will be fielded. Items will include:

  • respondents' personal history of quit attempts over the preceding 12 months;
  • level of nicotine addiction, and the nature of the quitting methods, products, and treatment information that respondents have used in order to attempt to quit;
  • quitting history and methods used for both cigarette smoking and other forms of tobacco (cigars, pipes, chewing tobacco, and snuff);
  • and information concerning the type of cigarette product used, and information related to harm reduction.

Another unique feature of the 2003 Special Topics questionnaire oriented toward tobacco cessation is the separate cognitive testing and special pretesting that was performed for the Spanish translation in addition to the parallel testing of the English version. This activity has added greatly to our knowledge of some ethnic differences related to conceptualizing questions on tobacco control that would have been undetected in a general population pretest of our instruments.

There are no existing comparable Federal data sources that can produce state-specific estimates for monitoring and evaluating initial and intermediate outcomes of tobacco use. The data collected in the 1998-99 Tobacco Use Supplement to the CPS can provide baseline measures for states and some substate levels in the first year of CDC's National Tobacco Control Program (NTCP). Because of the consistency in methodology the 2001-2002 Tobacco Use Supplement of the CPS will provide ongoing data for monitoring and evaluating initial and intermediate outcomes (e.g. workplace policies and home smoking rules, work place cessation services, health provide counseling) as well as final outcomes.

The TUS-CPS is the only available mechanism for measuring changes at the individual state level and some substate levels. Other related surveys, such as the National Health Interview Survey, the National Health and Nutrition Examination Survey, the Behavioral Risk Factor Surveillance System, and the National Household Survey on Drug Abuse are all inadequate for NCI and CDC program evaluation and surveillance purposes for the following reasons: 1) Do not include the necessary tobacco indicators for measuring initial and intermediate outcomes; 2) Do not require that all states administer the same tobacco measures; 3) Have insufficient sample sizes for estimating prevalence and activity at the state-specific level; or 4) Use different definitions of prevalence. In addition, the large sample size of the TUS provides opportunities for obtaining stable estimates on specific racial and ethnic populations (e.g. CPS sample size for Asian Americans is eight times larger than that of NHIS), and other important demographic subpopulations for assessing tobacco control disparities across the nation, regionally and for large states. These subpopulation estimates address specific tobacco objectives from Healthy People 2010.

Three other unique aspects of the TUS-CPS are its collection of information on tobacco control policies and interventions, collection of tobacco data within the context of economic and occupational data, and provision of data suitable for longitudinal analysis. Unlike the other national surveys, the TUS obtains information on tobacco control policies and tobacco control interventions (e.g. work place policies and physician/dentist advice, respectively) and attitudes towards those policies. In addition, TUS has the context of rich demographic, economic and occupational data from the Core CPS survey on labor force parameters, and due to its panel design, allows users to merge the special annual March Demographic Supplement providing additional data (on work experience, income, noncash income benefits, health insurance and migration) with the Tobacco Use Supplement conducted in a separate month. For example, tobacco researchers have published research on tobacco use and work place policies for a large number of occupations. Additionally, economists use TUS data to determine the cost burden of tobacco use across a number of income groupings. The TUS is also unique in that its design allows for a longitudinal component that can be built into repeated surveys.

RACE/ETHNICITY: PERACE is the variable name for race. The categories are: 1 = WHITE; 2= BLACK; 3 = AMERICAN INDIAN, ALEUT, ESKIMO; 4 =ASIAN OR PACIFIC ISLANDER; 5 = OTHER - SPECIFY. PRORIGIN is the variable for ethnicity, origin or descent. The categories for ehtnicity/origin/descent are: 01 = MEXICAN AMERICAN; 02 = CHICANO; 03 = MEXICAN (MEXICANO); 04= PUERTO RICAN ; 05= CUBAN; 06 = CENTRAL OR SOUTH AMERICAN; 07 = OTHER SPANISH ; 08 = ALL OTHER 09 = DON'T KNOW; 10 = NA.

DATA LIMITATIONS: We have recently just updated our standardized Spanish translation; however, similar to the situation of other national tobacco surveys we do not currently have a standardized questionnaire for other languages besides English and Spanish. We plan to improve this situation in the future. While overall supplement response rate is very good (about 85%), youth supplement self-response rate is under 70%. We are limited to the number of tobacco questions that can be asked since its not a supplement totally dedicated to tobacco use although it is very cost efficient as a supplement to a large-scale pre-existing survey.

STATUS: Intermittent data collection is active. Data collected in 1992-1993, 1995-1996, 1998-1999, 2001-2002 and a few questions in 2000. Special one-time Cessation Supplement will be fielded in 2003.

HOW TO ACCESS DATA:

For the 1995-1996 and 1998-1999 Surveys:

The 1998-1999 questionnaire and documentation are included in the May 1999: Tobacco Use Supplement File (Attachment 9), which can be downloaded from the U.S. Census Bureau's Technical Documentation Web site.

A single CD containing both TUS raw data and background documentation for 1995-1999 is available for $55 from the Census Bureau Customer Service Order Desk.

An order form (PDF) is included in Attachment 1 of the May 1999 Tobacco Use Supplement of the Census Bureau Technical Documentation.

More information on the CD contents: http://www.census.gov/mp/www/rom/msrom5fb.html

For the 1992-1993 Surveys:

A single CD containing both TUS raw data and background documentation for 1992 and 1993 is NOW available for $50 from the Census Bureau Customer Service Order Desk (Product ID - C1-C03-TOBF-02-US1).

For ALL TUS 1992-93 and 1995-99 phone/fax/mail orders:

Phone: (301) 763-INFO (4636) Fax: (301) 457-3842

Mail:

US Department of Commerce
US Census Bureau (MS 0801)
P.O. Box 277943
Atlanta, GA 30384-7943

WEB SITE: riskfactor.cancer.gov/studies/tus-cps

CONTACT PERSON: Anne Hartman, Risk Factor Monitoring and Methods Branch, Applied Research Program, Division of Cancer Control and Population Sciences, NCI.


TITLE: Atherosclerosis Risk in Communities Study

ACRONYM: ARIC

AGENCY/PROGRAM: National Heart, Lung and Blood Institute, National Institutes of Health

DESCRIPTION: Prospective epidemiologic study of cardiovascular disease in middle-aged persons in four U.S. communities, 15,792 participants. Four examinations were given with mortality and morbidity follow up. Education and income were determined by self report.

RACE/ETHNICITY: Self assessed. White; Black; Asian and Pacific Islanders; Native American; and Hispanic.

STATUS: Began in 1987, study ongoing.

HOW TO ACCESS DATA: Study results available in medical journal publications.

WEBSITE: http://www.nhlbi.nih.gov/resources/deca/directry.htm

CONTACT PERSON: Paul Sorlie, Ph.D.
(301) 435-0456

 


TITLE: Cardiovascular Health Study

ACRONYM: CHS

AGENCY/PROGRAM: National Heart, Lung and Blood Institute, National Institutes of Health

DESCRIPTION: Prospective epidemiologic study of cardiovascular disease in older persons in four U.S. communities 5201 participants. Repeat examinations and mortality and morbidity follow up were conducted to identify risk factors for cardiovascular disease.

RACE/ETHNICITY: Self-assessed. White, Black, American Indian or Alaskan Native, Asian or Pacific Islander.

STATUS: Began in 1987, study ongoing

HOW TO ACCESS DATA: Study results available in medical journal publications.

WEBSITE: http://www.nhlbi.nih.gov/resources/deca/directry.htm

CONTACT PERSON: Paul Sorlie, Ph.D.
(301) 435-0456

 


TITLE: Coronary Artery Risk Development in Young Adults

ACRONYM: CARDIA

AGENCY/PROGRAM: National Heart, Lung and Blood Institute, National Institutes of Health

DESCRIPTION: Prospective epidemiologic study of young adults in four U.S. communities, 5115 participants. Repeat examinations were given to determine the prevalence and change in cardiovascular risk factors.

RACE/ETHNICITY: Self assessed. White, Black, American Indian or Alaskan Native, Asian or Pacific Islander, Hispanic.

STATUS: Began in 1985, study ongoing

HOW TO ACCESS DATA: Study results available in medical journal publications.

WEBSITE: http://www.nhlbi.nih.gov/resources/deca/directry.htm

CONTACT PERSON: Paul Sorlie, Ph.D.
(301) 435-0456

 


TITLE: Honolulu Heart Program

ACRONYM: HHP

AGENCY/PROGRAM: National Heart, Lung and Blood Institute, National Institutes of Health

DESCRIPTION: The HHP is a prospective epidemiologic study of cardiovascular disease conducted in Honolulu, HI. There were 8006 men who participated in repeated examinations and were followed for cardiovascular disease and cancer.

RACE/ETHNICITY: All men were Japanese Americans.

STATUS: Began in 1965, study ongoing.

HOW TO ACCESS DATA: Data available as a public use CD Rom.

WEBSITE: http://www.nhlbi.nih.gov/resources/deca/directry.htm

CONTACT PERSON: Paul Sorlie, Ph.D.
(301) 435-0456

 


TITLE: National Longitudinal Mortality Study

ACRONYM: NLMS

AGENCY/PROGRAM: National Heart, Lung and Blood Institute, National Institutes of Health

DESCRIPTION: The NLMS is a prospective epidemiologic study of national sample of US population, focusing on socioeconomic status and mortality 1.3 million persons. The baseline data consists of Current Population Samples which were matched to the National Death Index for assessment of mortality. Many socioeconomic variables for analysis of cofactors related to mortality.

RACE/ETHNICITY: From self assessment, using standard Census Bureau definitions - White; Black; Asian and Pacific Islanders; Native American, Aleut, Eskimo; and Hispanic.

STATUS: Began 1979, study ongoing.

HOW TO ACCESS DATA: Data available as public use CD Rom.

WEBSITE: http://www.nhlbi.nih.gov/resources/deca/directry.htm

CONTACT: Paul Sorlie, Ph.D.
(301) 435-0456

 


TITLE: Puerto Rico Heart Health Program

ACRONYM: PRHHP

 

AGENCY/PROGRAM: National Heart, Lung and Blood Institute, National Institutes of Health

 

DESCRIPTION: The PRHHP is a prospective epidemiologic study of cardiovascular disease conducted in rural and urban areas of Puerto Rico. There were 9824 men who participated in 4 cardiovascular examinations and with 12 years of follow up.

 

RACE/ETHNICITY: All participants were of Hispanic origin.

STATUS: Began in 1965, study complete.

 

HOW TO ACCESS DATA: Data available as a public use CD Rom.

WEBSITE: http://www.nhlbi.nih.gov/resources/deca/directry.htm

CONTACT PERSON: Paul Sorlie, Ph.D.
(301) 435-0456

 


TITLE: The NHLBI Growth and Health Study

 

ACRONYM: NGHS

 

AGENCY/PROGRAM: National Heart, Lung and Blood Institute, National Institutes of Health

 

DESCRIPTION: Obesity and cardiovascular risk factors in black and white girls, 2379 participants.

 

RACE/ETHNICITY: Self assessment, White, Black

 

STATUS: Study ongoing

WEBSITE: http://www.nhlbi.nih.gov/resources/deca/directry.htm 


TITLE: Survey of Asset and Health Dynamics Among the Oldest-Old: HRS Auxiliary Study also known as Aging and Health in America

ACRONYM: AHEAD

AGENCY/PROGRAM: National Institute on Aging

DESCRIPTION: Purpose -- The course of age-related changes in health can be affected by several broad types of "resources:" economic resources which result from past employment, consumption, and savings; claims on structured programs such as Social Security, Medicare, and Medicaid; family resources of time and money which can be made available to an older relative for caregiving or the purchase of services.

Older individuals have differing levels and mixes of resources and consume them at varying rates as they age. A decline in health is likely to increase consumption of resources. Despite a number of recent studies of late life transitions, none provide detailed coverage of the joint dynamics of health, economic and family resources, and care arrangements.

The AHEAD study is intended to reduce the knowledge gap by providing data to address a broad range of scientific questions focused on the interplay of resources and late life health transitions.

Description -- AHEAD is a panel study of persons born in 1923 or earlier identified in the screening of 69,000 households for the 1992 HRS baseline (see description of the Health and Retirement Study above). AHEAD also includes the same oversamples as HRS and a supplemental sample of persons age 80 and older from the Medicare Master Enrollment File (HCFA). Next-of-kin provide information on health changes and distribution of assets for deceased respondents. More than 8200 persons were interviewed in the first wave of AHEAD in 1993.

Questionnaire topics include: cognitive performance-based testing; physical and functional health; economic status (assets and income); claims on transfer programs and contingent claims; dissaving and Medicaid eligibility; family structure, caregiving, and financial transfers; demographic characteristics; housing (including access to services); service use (community and nursing home); out-of-pocket costs for all services; seven experimental modules, including innovative measures such as a resiliency scale.

Data are being linked with information from Medicare and Medicaid files, the National Death Index, and Social Security Administration earnings and benefits files.

Current Activities -- The third wave of AHEAD was fielded in combination with HRS-98. These field activities are now coming to a close. This data collection included approximately 22,615 sample members consisting of survivors of the original HRS and AHEAD cohorts plus two new birth cohorts (1924-30 and 1942-47). From this point forward the AHEAD study will be merged with the HRS study, and the merged study will be a seamless representation of the U.S. non-institutionalized population in their fifties and older.

Future Plans -- A proposal for renewal funding to collect three more waves of data has been submitted to NIA for review. Future data collections will largely replicate the HRS-98 in design, format, coverage, structure and measurement. Proposed plans include the introduction of a new cohort in 2004.

RACE AND ETHNICITY: The AHEAD includes 100 percent oversamples of Hispanics and Blacks. The questions used to collect this information are as follows:

  • In what country were you born?
  • In about what year did you come to the U.S.?
  • Do you consider yourself Hispanic or Latino? Inapp, Yes, No, DK, RF
  • Would you say you are Mexican American, Puerto Rican, Cuban American or something else? Inapp, Mexican American/Chicano, Puerto Rican, Cuban American, Other, DK, RF
  • Do you consider yourself primarily White or Caucasian, Black or African American, American Indian or Asian, or something else? Inapp, White/Caucasian, Black/African American, American Indian or Alaska Native, Asian or Pacific Islander, Other, DK, RF

STATUS: Ongoing

HOW TO ACCESS DATA: Public Use Data Files --All publicly released data are available to download via the HRS website at <http://www.umich.edu/~hrswww>. The AHEAD Wave 1 dataset is publicly available, as is a partial public release of AHEAD Wave 2. The final public release of AHEAD Wave 2 is tentatively scheduled for August of 1999.

A very preliminary dataset from the HRS-98 data collection (which includes AHEAD Wave 3) is expected to be available in Summer of 1999. (Preliminary data releases are available under terms of a Conditions of Use Agreement; for more information contact via email: hrsquest@isr.umich.edu).

WEB SITE: http://www.umich.edu/~hrswww/

CONTACT NAME AND PHONE NUMBER: Robert J. Willis, Principal Investigator
Richard Suzman, Program Officer
Institute for Social Research National Institute on Aging
Phone: (301) 496-3138 Fax (301) 402-0051
University of Michigan Phone: (734) 936-7261 Fax (734) 747-1186
AHEADASK@umich.edu

For additional information about the AHEAD study or datasets contact Health and Retirement Study, Survey Research Center, P.O. Box 1248, Ann Arbor, MI 48106-1248; phone: 734-936-0314; fax: 734-647-1186; or email: hrsquest@isr.umich.edu.


TITLE: Established Populations for Epidemiologic Studies of the Elderly

ACRONYM: EPESE

AGENCY/PROGRAM: Epidemiology, Demography, and Biometry Program National Institute on Aging, National Institutes of Health

DESCRIPTION: The EPESE studies were developed to provide an epidemiologic resource for the conduct of a broad range of studies in representative samples of community-dwelling persons age 65 years and older. The goal of these studies has been to investigate the association of numerous factors (including medical conditions, demographic characteristics, social and psychological factors, medication use, and health behaviors) with important outcomes in aging populations, including death, disability, nursing home admission, and the onset of new chronic conditions. The three original community populations comprising the EPESE were located in East Boston, Massachusetts; Iowa and Washington Counties, Iowa; and New Haven, Connecticut. Baseline data collection began in December 1981, and annual interviews were conducted either in person (third and sixth years of follow-up) or by telephone (first, second, fourth and fifth years of follow-up) for 6 years following the baseline. A 5-year extension contract that expired in early 1994 in each of these sites provided the opportunity for data clean-up, continued monitoring of mortality through the National Death Index, and monitoring of hospital utilization through linkage to Medicare records from the Health Care Financing Administration (HCFA). The Piedmont Health Survey of the Elderly (PHSE) was added as the fourth site of the EPESE project in 1985. In this site, Duke University established a baseline sample of 4,164 people 65 years of age and older, 54 percent of whom were black. This cohort is the only southern EPESE population, constitutes a representative sample of the elderly in five North Carolina counties, and includes both urban and rural participants. The baseline survey for this site began in January of 1986 and was completed in June 1987. Six annual follow-up evaluations have been completed since then, by telephone and in person, on the same schedule as the original EPESE sites. A 7-year contract was awarded to Duke University Medical center January 1, 1991, to conduct the third in-person survey wave and to continue surveillance for major endpoints using the National Death Index and HCFA hospitalization data tapes after direct contact with subjects was completed.

 

RACE/ETHNICITY: Racial and ethnic categories are: White non-Hispanic; Black Non-Hispanic; Asian or Pacific Islander; Aleutian, Eskimo or American Indian; Hispanic; and Another group not listed. Participants were asked, "Please give me the number of the group or groups which describes your racial background? What is your race?" This was done in New Haven, Iowa, and North Carolina. East Boston did not identify racial categories. East Boston, New Haven, and Iowa all asked, "In what state or country were you born?"

 

STATUS: Contract closeout occurred for the original EPESE contracts in calendar year 1994. The Duke contract is scheduled for closeout December 31, 1999. A limited number of follow-up assessments beyond the six funded through the NIA contracts have been funded by NIA grants. The EPESE data base represents one of the largest resources of epidemiologic data on representative, community-dwelling populations of older persons. As such, it will remain an important resource for answering a wide range of questions on older populations that can be addressed using data from annual interviews and information on drug utilization, hospitalizations, and cause of death. It is expected that future contributions will come from EDB Program staff, investigators at the sites, and outside investigators who utilize the archived data base.

 

HOW TO ACCESS DATA: The National Archive of Computerized Data on Aging (NACDA), located within the Inter-university Consortium for Political and Social Research (ICPSR), produced a CD-ROM entitled, "Health and Well-Being of Older Adults." This CD-ROM contains the EPESE Baseline data identified as ICPSR #9915. Data files on the CD-ROM are ASCII files with internal formatting characteristics specific to any proprietary software. To assist users, data definition statements for SAS and SPSS are provided.

 

CONTACT PERSON: Richard J. Havlik, M.D., M.P.H.
NIA
(301) 496-1178

NACDA
(313) 936-1752
nacda@icpsr.umich.edu.


TITLE: The Health and Retirement Study

ACRONYM: HRS

AGENCY/PROGRAM: National Institute on Aging

DESCRIPTION: The Health and Retirement Study provides data to researchers, policy analysts, and program planners to inform major policy decisions affecting retirement, health insurance, saving and economic well-being. These groups have already made extensive use of the HRS to study individual work, savings, and retirement decisions and to model behavioral response to changes in Social Security and Medicare benefits.

HRS is a national panel study based on biennial interviews. The original sample consists of in-home, face-to-face interviews of persons who were age 51-61 in 1992, and their spouses (7,600 households, over 12,600 persons). Hispanics, Blacks and Florida residents were oversampled. The HRS data collection has incorporated the AHEAD sample (see description of the Asset and Health Dynamics Among the Oldest Old Study below) as of 1998. Follow-ups are done by mail/phone every second year. New baseline cohorts (those born in 1942-1947 or in 1924-1930) were added in 1998.

The HRS is linked with the following administrative data: 1) Health and pension benefit plans collected from employers, 2) Data from the National Death Index, 3) Social Security Administration earnings and benefits data, and 4) Medicare files when respondents reach Medicare age Questionnaire topics include: health and cognitive conditions and status; retirement plans and perspectives; attitudes, preferences, expectations, and subjective probabilities; family structure and transfers; employment status and job history; disability; demographic background; housing; income and net worth; health insurance and pension plans; experimental modules. Next-of-kin provide information on health changes and distribution of assets for deceased respondents. Additional data from employers, Medicare files, the National Death Index, and Social Security Administration earnings and benefits files are being linked to interview data.

RACE AND ETHNICITY: The HRS includes 100 percent oversamples of Hispanics and Blacks. The questions used to collect this information are as follows:

  • In what country were you born?
  • In about what year did you come to the U.S.?
  • Do you consider yourself Hispanic or Latino? Inapp, Yes, No, DK, RF
  • Would you say you are Mexican American, Puerto Rican, Cuban American or something else? Inapp, Mexican American/Chicano, Puerto Rican, Cuban American, Other, DK, RF
  • Do you consider yourself primarily White or Caucasian, Black or African American, American Indian or Asian, or something else? Inapp, White/Caucasian, Black/African American, American Indian or Alaska Native, Asian or Pacific Islander, Other, DK, RF

STATUS: Ongoing

HOW TO ACCESS DATA: Public Use Data Files -- All publicly released data are available to download via our website at http://www.umich.edu/~hrswww. Datasets for Waves 1 and 2 of HRS are publicly available, as is a partial public release of HRS Wave 3. Data from complementary sources such as SSA and Employer Pension Plans are also available through the Restricted Data Process described on the website.

The final public release of HRS Wave 3 is tentatively scheduled for August 1999. A very preliminary dataset from the HRS-98 data collection is expected to be available in June 1999. (Preliminary data releases are available under terms of a Conditions of Use Agreement; for more information contact via email: hrsquest@isr.umich.edu).

Current Activities -- Field activities on Wave 4 (HRS-98) are now coming to a close. This round of interviews included approximately 22,615 sample members consisting of the original HRS and AHEAD cohorts plus two new birth cohorts (1924-30 and 1942-47). From this point forward the HRS study will be a seamless representation of the U.S. non-institutionalized population in their fifties and older.

Future Plans -- A proposal for renewal funding to collect three more waves of data has been submitted to NIA for review. Future data collections will largely replicate the HRS-98 in design, format, coverage, structure and measurement. Proposed plans include the introduction of a new cohort in 2004.

CONTACT NAME AND PHONE NUMBER: Robert J. Willis, Principal Investigator
Richard Suzman, Program Officer
Institute for Social Research National Institute on Aging
(301) 496-3138; fax (301) 402-0051
University of Michigan (734) 936-7261; fax (734) 647-1186

For additional information about the HRS study or datasets contact Health and Retirement Study, Survey Research Center, P.O. Box 1248, Ann Arbor, MI 48106-1248; phone: 734-936-0314; fax: 734-647-1186; or email: hrsquest@isr.umich.edu The HRS and AHEAD home page address is http://www.umich.edu/~hrswww/


TITLE: National Long Term Care Survey

ACRONYM: NLTCS

AGENCY/PROGRAM: National Institute on Aging, National Institutes of Health

DESCRIPTION: The 1982, 1984, 1989, 1994, and 1999 National Long Term Care Surveys (NLTCS) are surveys of the entire aged population with a particular emphasis on the functionally impaired. The surveys are designed to measure the point prevalence of chronic (90 days or more) disability in the U.S. elderly Medicare enrolled population and changes (both improvement and incidence) in chronic disability (and institutionalization) over time. Because the samples are drawn from Medicare beneficiary enrollment files, they are considered nationally representative of both community and institutional residents. NLTCS sample persons are followed until death and are permanently and continuously linked to the Medicare record system from which they are drawn; virtually 100% of cases can be longitudinally tracked so that changes in disability may be identified, as well as exact dates of death, detailed Medicare expenditures and types of service use. An oversample of the very old (ages 95+) was included in 1984 (N=540) and in 1999 (N=600). Next-of-kin mortality follow-up was conducted in 1984 and in 2000 to obtain retrospective information over the prior 2-4 year period about deceased subjects. Funding constraints precluded conducting the mortality follow-up after every wave. The surveys provide nationally representative data on:

  • The prevalence and patterns of both physical and cognitive functional limitations, medical conditions, recent medical problems, and health care services used;
  • Longitudinal and cohort patterns of change in functional limitation and mortality over 17 years;
  • The kind and amount of formal and informal services received by impaired individuals and how they are paid;
  • 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.

The collection of blood and buccal cell samples using cases from the 1999 NLTCS began on October 16, 2000, making it possible to examine national distributions of the prevalence of particular genes predisposing to major chronic conditions, such as numerous APOE alleles (which relate to Alzheimer's and cardiovascular disease, and maybe fundamental longevity), the Werner Syndrome gene (which is a marker for premature aging), and the ACE (which controls blood pressure and renal function) and P53 (apoptosis genes). The Pilot Project for collecting bloods was recently completed successfully within budget and on time.  Bloods were collected on about 650 persons and buccal wash samples from almost 2,000 cases. In the full study using, in addition, cases from the proposed 2004 NLTCS sample, there will be 3,000 new blood samples drawn from persons aged 65 to 89, and 2,000 buccal cell samples drawn from (mutually exclusive) persons aged 80+.  The combination of the pilot and full study sample will yield about 3,700 bloods and 4,000 buccal wash specimens allowing analyses of some infrequent genes. There will also be blood drawn from siblings of these 5,000 (in 2004) elderly NLTCS respondents. The genetic data will be subject to tighter controls because of the finite amount of biological material. An independent advisory committee will screen proposals requesting access to the biological materials, and analysts granted access must agree to turn their data over for archiving upon completion of their analysis.

Funding History: The first wave (1982-1984) was funded by HCFA and the Office of the Assistant Secretary for Planning and Evaluation (ASPE). More recent waves (1989, 1994, 1999, and the planned continuation through 2004) have been funded by NIA, with the Census Bureau administering the survey, except for the bloods and buccal swabs. For the 1999 wave, the Administration on Aging (AOA) provided $75,000 for the Caregivers Supplement, where caregivers (usually the proxy respondents) are given a separate instrument. Caregivers were also surveyed in 1982 and 1989.

RACE/ETHNICITY: RACE_DET (Missing, White, Black, Asian/Pacific Islander, American Indian/Eskimo, Aleutian/Other); RACE_WBO (White, Black, Other).

DATA LIMITATIONS: No information on limitations has been obtained as of Oct. 2002.

STATUS: A phrase representing the frequency of data collection and present status. For example, the phrase, "This intermittent data collection is inactive," means the data collection was intermittent and has stopped with no plans for future data collection, while the phrase, "This single-time data collection is in process," means the data collection is a one-time study still being conducted.

For projects with repetitive data collection [i.e., periodic, intermittent, continuous], the date of the first data collection expressed as either a single date or a time period, and for inactive projects the date also of the last data collection.

HOW TO ACCESS DATA:The 1982, 1984, 1989, and 1994 National Long Term Care Survey Public Use Files are now available on CD-ROMs. The 1999 survey will be added during 2000. This CD-ROM may be requested by printing out the data request letter (see sample letter on the next page). This letter must be notarized. After receipt of your notarized letter, the CD-ROM will be shipped. Detailed information on the application procedure is available from the Center for Demographic Studies' web site: www.cds.duke.edu.

Continuously linked Medicare data (1982 thru 1994) for the persons in the 1982, 1984, 1989, and 1994 National Long Term Care Surveys have been placed on CD-ROM. 1999 data will be added during 2001. These were the data that were previously available from the Center for Demographic Studies. All records have a unique sequence number to link to the National Long Term Care Survey respondents. Documentation for all years has been included on the CD for ease of use.

This CD may be obtained through Kimberly Elmo at the Health Care Finance Administration (410) 786-0161, Kelmo@hcfa.gov

Distributor from whom an individual may order available data products is given where applicable.

Individual product names and order numbers that a person would need to use when ordering data products from the project are given where applicable. Product numbers with the prefix "PB" are numbers used for products distributed by the National Technical Information Service, U.S. Department of Commerce. Prices for orders to foreign countries may vary. Prices were applicable at the time of this publication and are subject to change.

WEB SITE: http://www.cds.duke.edu/index.html?page=/NLTCS/NLTCS_home.htm

CONTACT PERSON: Larry Corder, Ph.D.
Duke University
Center for Demographic Studies
2117 Campus Drive, Box 90408
Durham, N.C. 27708-0408
phone: (919) 684-6126 fax: (919) 684-3861
Larry@cds.duke.edu

Richard M. Suzman, Project Officer
Associate Director, Behavioral and Social Research
National Institute on Aging
phone: (301) 496-3131 fax: (301) 402-0051
Suzman@nih.gov


TITLE: Women's Health and Aging Study (WHAS)

ACRONYM: WHAS

AGENCY/PROGRAM: National Institute on Aging, National Institutes of Health

DESCRIPTION: There are two separate but complementary Women's Health and Aging studies:

WHAS I has evaluated 1,002 women 65 years and older who represented the one-third most disabled older women living in the community, to determine the causes and course of disability and opportunities for prevention in these moderately to severely disabled older women. Analyses are ongoing to determine the longitudinal predictors of disability. The WHAS I investigators are funded through an IRPG mechanism to conduct focused analyses of the hypothesized contributions of biomediators to disability and frailty in older adults. The RO1 will also provide the basis for developing a synthesis of the pathway to, and risk factors for, disability in older women from WHAS data; it will be developed into the second WHAS monograph. The second milieu and its role in disability in older adults, particularly the roles of race, poverty and education. A third RO1 which will be resubmitted as part of this IRPG package seeks to understand the role of neighborhood and neighborhood/environmental characteristics ub tge development and progression of disability. The IRPG has a shared resource core for data management, shared data analysis advice and oversight, and archiving of WHAS data. WHAS I was funded by an NIA (intramural) contract since 1991, and is due to end in 2002. WHAS I previously received no other NIH funding except through ORWH, which partially funded a monograph with results from the study. The Commonwealth Fund provided funds for an add-on study of caregivers, and Quest Diagnostics, a private laboratory, provided some funds for collection of blood specimens from study participants. The latter data, merged with the main WHAS data set, provide the basis for the new analyses on biomediators and disability. Data from WHAS I have not been archived, but investigators have collaborated with researchers throughout the US and Europe.

WHAS II, funded through an RO1 grant by the NIA, is a prospective, observational cohort study that has been evaluated older women who were among the two-thirds least disabled in the community at baseline, to understand the natural history and etiology of disability onset. The study, funded since its inception by NIA, seeks to determine the factors that precipitate disability, and whether there is a preclinical stage of disability in mobility, ADL and IADL tasks that identifies those who will go on to have difficulty in these areas. This study was funded through a competitive renewal for ongoing data collection in three exams, each take 18 months to complete. We are currently beginning the fifth intensive evaluation of the cohort of 436 community-dwelling women who were 70-79 years of age and high functioning in 1994-5 at the time of recruitment. One more follow-up evaluation is planned 18 months from now.

RACE/ETHNICITY: This information is not yet available on the internet.

DATA LIMITATIONS: No limitations known as of October 2002.

STATUS: Contact Principal Investigator for this information.

HOW TO ACCESS DATA: Contact Principal Investigator for this information

WEB SITE: http://www.nia.nih.gov/health/pubs/whasbook/title.htm

CONTACT PERSON:
Linda Fried, Ph.D
Johns Hopkins University
615 N. Wolfe Street, Room 5010
Baltimore, MD 21205


TITLE: National Cooperative Inner City Asthma Study, Phase I

 

ACRONYM: NCICAS

 

AGENCY/PROGRAM: National Institute of Allergy and Infectious Disease, National Institutes of Health

 

DESCRIPTION: The National Cooperative Inner City Asthma Study (NCICAS), Phase I, was a cross sectional 8-site multi-center study of 1528 inner city asthmatic children aged 4-9 years. Recruitment, which occurred in inner city emergency rooms (ERs) and clinics, began in November 1992. Final data collection was completed in June 1994. The protocol included an eligibility assessment, baseline interview, and telephone follow-up calls at intervals of 3, 6, and 9 months after the baseline data collection. At each of these intervals, participants reported frequency of asthma symptoms over 2 weeks and utilization of hospitals, ERs and clinics over the past 3 months. Because this was not a random sample of inner city children, the findings only apply to those who meet the eligibility criteria and are frequent users of these types of health care facilities. All data were collected by self-report; there was no confirmation of utilization by reviewing ER/clinic records.

 

Files contain data on: Functional/Health Status; Services Utilization; Services Expenditure and Financing; Socioeconomic; Age/Gender; Other Demographic /Sociocultural; and Behavioral.

 

RACE/ETHNICITY: Puerto Rican; Dominican; Mexican; South American; Central/Latin American; Other Hispanic; African American; West Indian; Caribbean Black; White (ethnic group specified); Asian (ethnic group specified); Mixed; Native American; and Other.

 

CONDUCTED DURING: November 1992/June 1994

 

STATUS: This periodic (every 3 months over a one-year period) data collection is completed.

 

HOW TO ACCESS DATA: Some of the data have been published. Other papers are in process of publication. The remainder of the data will be available shortly.

 

Data will not be available for public use until early 2003.

 

CONTACT PERSON: Herman E. Mitchell, Ph.D.
Rho Incorporated
6330 Quadrangle Drive
Suite 500
Chapel Hill, North Carolina 27517
(919) 408-8000 ext. 223/ fax (919) 408-0999
hmitchell@rhoworld.com 


TITLE: National Cooperative Inner City Asthma Study, Phase II

 

ACRONYM: NCICAS

 

AGENCY/PROGRAM: National Institute of Allergy and Infectious Disease, National Institutes of Health

 

DESCRIPTION: The National Cooperative Inner City Asthma Study (NCICAS), Phase II is an intervention study aimed at reducing the asthma morbidity of inner city children aged 5-11 years. There are a total of 540 intervention and 540 control group children across 8 Asthma Study Units in 8 centers. The intervention consists of a specially trained social worker called an "Asthma Counselor" (AC) who runs group and individual sessions with the intervention families. The baseline assessments were completed August - October 1994. The core intervention ran from Nov 1994 - December 1994, and a year follow up (including more intervention) continued through December 1995. A second follow up (without more intervention) continued through December 1996. Process evaluation data are collected by the AC, including attendance at sessions and topics and problems discussed. Evaluation phone calls are being conducted at 2 month intervals to measure the success of the intervention. These calls include questions about health care utilization and morbidity.

 

RACE/ETHNICITY: Puerto Rican; Dominican; Mexican; South American; Central/Latin American; Other Hispanic; African American; West Indian; Caribbean Black; White (ethnic group specified); Asian (ethnic group specified); Mixed; Native American; and Other.

 

OTHER DATA: Functional/Health Status; Services Utilization; Services Expenditure and Financing; Socioeconomic; Age/Gender; Other Demographic /Sociocultural; Behavioral.

 

STATUS: This periodic (every 2 months over a two-year period) data collection is completed.

 

START/END DATES: August 1994/December 1996

 

HOW TO ACCESS DATA: Some of the data have been published. Other papers are in process of publication. The remainder of the data will be available shortly.

 

CONSTRAINTS: Data will not be available for public use until early 2003.

 

CONTACT PERSON: Herman E. Mitchell, Ph.D.
Rho Incorporated
6330 Quadrangle Drive
Suite 500
Chapel Hill, North Carolina 27517
919-408-8000 ext. 223/ fax (919) 408-0999
hmitchell@rhoworld.com


TITLE: National Longitudinal Alcohol Epidemiologic Survey

 

ACRONYM: NLAES

 

AGENCY/PROGRAM: National Institute on Alcohol Abuse and Alcoholism, Division of Biometry and Epidemiology, National Institutes of Health

 

DESCRIPTION: The NLAES is a household survey of 42,862 persons 18 years and older in the coterminous United States. The sampling plan included oversampling of black respondents and respondents from 18 to 29 years of age. Face-to-face interviews were conducted by the Census Bureau. The NLAES can produce estimates for the coterminous U.S. and for the 4 census regions (excluding Alaska and Hawaii from the West region). The survey was designed to provide comprehensive information on amounts and patterns of alcohol consumption and on problems associated with alcohol. It is the only nationally-representative survey that uses current DSM-IV psychiatric criteria for classifying alcohol use disorders (i.e., alcohol abuse and dependence). It also includes data on age of drinking onset, exposure to alcohol treatment, family history of alcoholism, major depressive disorder, smoking, and the presence of major depressive disorders. Data for Wave 1 were collected in 1992. At present there are no plans for a follow-up of this sample. Sociodemographic items include: education, marital status and history, periods of military service, family composition at time of youth and current family composition, employment status, occupation, industry, household income, family income, health insurance, retirement or disability pension, and supplemental income from savings, investments, or government financial assistance programs.

 

RACE/ETHNICITY: Information on race/ethnicity in the NLAES is based on respondents' self-report. Race categories are: white, black, American Indian, Eskimo, or Aleut, Asian or Pacific Islander, and other. Ethnicity is reported as Hispanic or Nonhispanic. In addition, there are 58 categories of ethnic origin (e.g., African, Belgian, Dutch, Indonesian, Korean, Lebanese, Russian, Samoan, Taiwanese, Turkish) and almost 100 categories for State/territory/foreign country of birth.

 

STATUS: Completed

 

HOW TO ACCESS DATA: Public use computer tape available from NIAAA

 

CONTACT PERSON: Bridget F. Grant, Ph.D.
(301) 443-7370


TITLE: National Epidemiologic Survey on Alcohol and Related Conditions

ACRONYM: NESARC

AGENCY/PROGRAM: National Institute on Alcohol Abuse and Alcoholism, Division of Biometry and Epidemiology, National Institutes of Health

DESCRIPTION: The National Epidemiologic Survey on Alcohol and Related Conditions (NESARC) is a nationally representative survey of the U.S. population aged 18 and older (sample size 43,097) .The source of the NESARC sample is the Census Long Form Transitional Database (CLFTD), also known as the American Community Survey. Within this sampling frame, Blacks and Hispanics have been oversampled so that each will be approximately 19% of the total number of NESARC respondents. Young adults (18-24) have also been oversampled (at a rate of about 2.25:1). NESARC also includes residents of a sample of non-institutionalized group quarters (derived from the Census 2000 Group Quarters Inventory).The response rate was 85.5%. Wave 2 of the NESARC is planned for 2004-2005.

NESARC's major objective is to gather the data needed to describe alcohol consumption patterns and estimate the incidence and prevalence of alcohol use disorders and their associated disabilities in the U.S. general population. This will allow examination of the natural history of alcohol use disorders and their associated disabilities and identification of population subgroups at risk. It will also help inform the development of rational and scientifically-based intervention and prevention programs as well as track several Healthy People 2010 objectives. The first wave of NESARC was conducted in 2001-2002; a second wave is planned for 2004-2005.

RACE/ETHNICITY: Race/ethnicity data collected under Statistical Directive No. 15.

DATA LIMITATIONS: Data can not be used to derive state estimates.

STATUS: This is a longitudinal survey with Wave 2 planned for 2004-2005.

HOW TO ACCESS DATA: The data will be available on the NIAAA website.

WEB SITE: The data are not yet available. Wave 1 closed in July 2002.

CONTACT PERSON: Bridget F. Grant, Ph.D.
(301) 443-3306

 


TITLE: National Institute of Mental Health (NIMH) Epidemiologic Catchment Area program

 

ACRONYM: NIMH, ECA

 

AGENCY/PROGRAM: National Institute of Mental Health, National Institutes of Health

 

DESCRIPTION: The National Institute of Mental Health (NIMH) Epidemiologic Catchment Area program (ECA) was a collaborative research project to assess the prevalence of mental and addictive disorders and to estimate the use made of different sectors of the service system. Two waves of data were collected by face to face interviews using the NIMH diagnostic Interview Schedule on adult populations aged 18 and older in the community and in institutions. The first wave included 20,291 interviews and the second wave, 15,849. Additional service use information was collected by telephone at the six-month interval between the two interviews. The data was collected by five universities, Yale, Johns Hopkins, Washington University at St. Louis, Duke University and UCLA between 1980 and 1985, drawing samples in nearby communities, including institutional data.

 

RACE/ETHNICITY: Race and ethnicity were asked by self report using the following categories (n's from wave 1):

  • American Indian 145
  • Alaskan Native 3
  • Asian 216
  • Pacific Islander 26
  • Black, Not Hispanic 4287
  • Hispanic 1433
  • White, Not Hispanic 12,152
  • Other, Unknown 310

Education, occupation, and income were collected.

STATUS: Completed

 

HOW TO ACCESS DATA: Computer tapes (Accession Number PB92-503481) from the National Technical Information Service (703-487-4650)

 

CONTACT PERSON: Karen Borden at 301-443-1616 


TITLE: National Comorbidity Survey- Replication, National Survey of African American Mental Health, and National Latino and Asian American Study

ACRONYM: NCS-R, NSAA, and NLAAS

AGENCY/PROGRAM: National Institute of Mental Health, National Institutes of Health

DESCRIPTION: Using a Cooperative Agreement (U01) mechanism, NIMH is funding 3 studies that will examine mental health in a combined representative sample of over 34,000 Americans, age 13 and older. The studies will assess the prevalence of mental disorders and their sociodemographic correlates; patterns of service use for people with mental disorders; and related disability and impairments using core instrumentation (the WHO Composite International Diagnostic Interview - CIDI). The NSAA and NLAAS studies will focus on racial /ethnic prevalence and service use variations as well as sub-population specific issues that are known or suspected to be risk factors or correlates of disorder (i.e. environmental context; social position). The nationally representative NCS-R includes inter- agency sponsored sub-studies to calibrate brief 'indicator' scales on disability (for the Bureau of Labor Statistics) child behavior and mental illness (for NCHS). All study designs include clinical re-appraisal of 10% of the sample. This project also represents the U.S. contribution to the WHO World Mental Health initiative which consists of over 35 countries conducting mental health surveys using the same core set of measures to allow for cross national comparisons of the prevalence, severity and correlates of mental disorders as well as an overall determination of the global burden of mental disorders.

An administrative supplement was awarded to the NCS-R for the development and support of 1) WHO CIDI training materials for researchers and interviewers; 2) modularized computer program code so the core instrument may be adapted for use in other surveys or research projects and 3) web pages to post technical materials that will complement the public use data files and access to individualized technical assistance via e-mail/phone contact with survey support staff. Funding for the field work associated with these survey's will end in 2004.

NIMH 2004- 2005

No new data collection efforts are projected for 2004 - 2005. NIMH plans to support analysis of the vast data collected in 2000- 2003 by issuing a Program Announcement specific to secondary analysis; by encouraging the integration of survey data analysis training in psychiatric epidemiology training programs as well as training for new and or independent researchers; by promoting the use of these data as national benchmarks; and by offering the instruments as a 'common currency' resource that will allow cross- walks between clinical and general population studies. NIMH also plans to continue to participate in inter-agency activities to advance development of health assessment theory and practice as well as research on Summary Health Measures that may be used in a variety of surveys.

RACE/ETHNICITY: Ethnicity : Hispanic/ Latino/ Spanish (Mexican, Mexican American, Chicano, Puerto Rican, Cuban, South/Central American, Other Spanish)

Race:

  • White/ Caucasian
  • Black/African American
  • American Indian
  • Alaska Native
  • Asian
  • Native Hawaiian Pacific Islander

DATA LIMITATIONS: These data are collected from samples of non-institutionalized, civilian households and therefore do not cover persons who are homeless, who reside in long term care nursing or psychiatric care facilities, or who are active duty members of the military.

STATUS: This single-time data collection is in process.

HOW TO ACCESS DATA: Public use data files will be made available via the internet

WEB SITE: To be established (and announced in the NIH Guide) once data become available

CONTACT PERSON: Lisa J. Colpe, Ph.D., MPH , (301) 443-3728


TITLE: National Institute of Mental Health (NIMH) Treatment of Depression Collaborative Research Program

 

ACRONYM: NIMH, TDCRP

 

AGENCY/PROGRAM: National Institute of Mental Health, National Institutes of Health

 

DESCRIPTION: The NIMH Treatment of Depression Collaborative Research Program (TDCRP) was a collaborative agreement between NIMH (Mood, Anxiety and Personality Disorder Research Branch) and three research sites, George Washington University, University of Oklahoma and the University of Pittsburgh. The Data Management and Analysis Facility for the study was the Department of Veterans Affairs Cooperative Studies Program Coordinating Center at the Perry Point, Maryland VA Medical Center. The NIMH TDCRP was the first coordinated study initiated by the NIMH in the field of psychotherapy. The study had two major aims: 1) to test the feasibility and value of the collaborative clinical trial model in the area of psychotherapy research and 2) to study, within this research model, the effectiveness of two specific forms of psychotherapy for treating nonbipolar, nonpsychotic depressed outpatients. There were 239 patients in the study. Education, occupation, and income were collected

 

RACE/ETHNICITY: Race and ethnicity were asked for mother, father, patient and spouse as being white or other, which was to be specified.

 

STATUS: Completed

 

HOW TO ACCESS DATA: Computer tapes (Accession Number PB94-501806GEI from the National Technical Information Service (703-487-4650).

 

CONTACT PERSON: None 


TITLE: Current Population Survey - Nativity Supplement

ACRONYM: CPS

 

AGENCY/PROGRAM: National Institute for Child Health and Human Development, National Institutes of Health (NICHD) and U.S. Bureau of the Census.

 

DESCRIPTION: The Current Population Survey (CPS) is a cross-sectional survey conducted with approximately 72,000 households every month, primarily to measure changes in the labor force. It is conducted by the U.S. Bureau of the Census and administered to panels of respondents, who revolve into the sampling plan eight times in a 1.5-year period. This latter characteristic gives rise to a limited longitudinal capability in the CPS. The Census Bureau has put "place of birth" and "date of first entry into the U.S." (question reads "when did you come to live in the U.S.") on the control card for each respondent. This allows all information gathered by the CPS to be combined with information about nativity status and allows the creation of a time series/cross section data set that has been a major addition to the data available for immigration research. NICHD supported the collection of these data for the first five years, January 1994 through December 1999; these items have now become a regular part of the control card.

 

STATUS: Data have been obtained from interviews of 72,000 nationally representative, U.S. households from January 1994 through March 2002. Collection of these data will continue as a regular part of the CPS and will be available for future years.

 

HOW TO ACCESS DATA: www.bls.census.gov/cps or ferret.bls.census.gov/

 

CONTACT PERSON: Joseph M. Costanzo
U.S. Bureau of the Census
(301) 763-2411

 


TITLE: Mexican-American Study Project - Follow Up

AGENCY/PROGRAM: National Institute for Child Health and Human Development, National Institutes of Health

DESCRIPTION: This is an intra-generational and inter-generational study on change and persistence in ethnic identity/behavior and socio-economic mobility among Mexican Americans in Los Angeles and San Antonio. To build this longitudinal study, the original respondents of a landmark 1965-66 study, The Mexican American People (Grebler, Moore, and Guzman, 1970), were re-interviewed. In addition, we interviewed two of the respondents' adult children, thus producing an inter-generational sample. The purpose of our study is examine (1) intra-generation and inter-generational socio-economic mobility and (2) how ethnic identity and behavior persisted or changed over a 30-year lifetime and from one generation to the next among Mexican Americans. We searched for 792 respondents in the Los Angeles sample and 399 in San Antonio. We located 78 percent of the Los Angeles sample and 80 percent of the San Antonio sample. We have interviewed 70 percent of the located original respondents in the Los Angeles sample and 83 percent of the located San Antonio sample. This yielded an overall response rate of 55 percent for the Los Angeles sample and 66 percent for San Antonio. We interviewed 74 percent of the child Los Angeles sample and 76 percent of the child San Antonio sample.

STATUS: Data collection is completed and data analyses are underway.

HOW TO ACCESS DATA: Not yet available.

CONTACT PERSON: Vilma Ortiz
University of California at Los Angeles
Los Angeles, CA 90095
(301) 206-5218


TITLE: National Longitudinal Study of Adolescent Health

 

ACRONYM: AddHEALTH

AGENCY/PROGRAM: Demographic and Behavioral Sciences Branch, National Institute for Child Health and Human

Development, National Institutes of Health

 

DESCRIPTION: This study provides a comprehensive view of the health and health behaviors of adolescents and the antecedents - personal, interpersonal, familial, and environmental of these outcomes. The study features a longitudinal, multi-level design with independent measurement at the individual, family, peer group, school, and community levels. The basic sample was drawn from a stratified probability sample of 80 high schools and associated feeder schools (middle or junior high schools) nationwide. Information on peer networks, non-sensitive health behaviors, and school climate was collected in the schools from all students attending grades 7-12. A representative sample of 21,000 adolescents were repeated after one year in 1996. School policies and characteristics were reported by school administrators in a short questionnaire. Community and neighborhood characteristics were measured using independent sources of existing data. Young men and women are represented equally in the sample. Over-samples of Puerto Rican, Cuban, Chinese, and African American youth residing in well-educated households supplement the sample sizes for these groups. The study also includes over-sampling of sibling pairs with varying degrees of biological relationship, physically disabled youth, and enhanced data on peer influence.

Between August 2001 and April 2002, NICHD funded a third wave of interviews with adolescents who participated in the first in-home interview. Over 15,000 young adults ages 18 to 25 completed the interview, a 77.4% response rate. The interview covered a broad range of topics related to health and health behaviors; educational, career, and family transitions; and engagement with religious institutions, the criminal justice system, and civic organizations. The new data will provide an important resource for research on the impact of family, school, peer, community and other protective factors in adolescence on health and behavior in the transition to adulthood. The Principal Investigator expects to make the data available to researchers in the Spring of 2003.

 

RACE/ETHNICITY: Individuals were asked to self-identify their race, ethnicity and duration of domicile in the United States. They were able to select from a wide range of race/ethnicity options and were permitted to select more than one category. The main sample includes, in addition to self-identified African-Americans and Caucasians, a significant number of Chinese, Japanese, Mexican-Americans, Cubans, Puerto Ricans, Nicaraguans, South Koreans, Filipinos, South Koreans and Vietnamese. When considering the major race/ethnicity categories the sample is 11% Hispanic, all races, 24.4% African-American, non-Hispanic, 3.7% Asian, non-Hispanic, 2.1% Native American, non-Hispanic, .9% other, non-Hispanic, and 57.4% White, non-Hispanic, and .1% had missing data on race/ethnicity.

STATUS: Two rounds of data collection have been completed, and a competing continuation has just been awarded to enable a third round of data collection in the year 2000 when the respondents will be young adults.

 

HOW TO ACCESS DATA: Data from the study have been available since 1997, with access from the world-wide-web for the code books and data set contents. Appropriate protection from deductive disclosure is in place. In addition, a CD rom is available for purchase from Sociometrics, and special arrangements may be made with the principal investigator for other data access needs.

 

WEB SITE: www.cpc.unc.edu/addhealth

 

CONTACT PERSON: Christine Bachrach, Chief
Demographic and Behavioral Sciences Branch, NICHD
(301) 496-1174


TITLE: National Survey of Adolescent Males

 

ACRONYM: NSAM

 

AGENCY/PROGRAM: National Institute for Child Health and Human Development, National Institutes of Health

 

DESCRIPTION: The National Survey of Adolescent Males (NSAM) consists of four household-based surveys; a three-wave, longitudinal study conducted between 1988 and 1995; and a 1995 new cohort survey. The NSAM examines factors affecting young men's (and their partners') risk of becoming infected with HIV or other sexually transmitted diseases or of becoming a parent. The 1988 NSAM was the first nationally representative survey of the sexual and risk-related behavior of young, never-married men in the U.S. since 1979. The survey was originally designed to correspond with the National Center for Health Statistics' National Survey of Family Growth (Cycle 4, 1988) for women of childbearing ages. All waves of the NSAM cover similar topics, with varying degrees of emphasis and reference time-periods. One of the major contributions of NSAM has been the extent to which it has enabled researchers to examine changes in fertility-related behaviors of younger men over time.

 

The 1988 old cohort and 1995 new cohort surveys drew a nationally representative, multistage area, probability sample that oversampled for Blacks and Hispanics. The primary mode of data collection was face-to-face interviews and the most sensitive topics were assessed with confidential, self-administered questionnaires (SAQ). The interviewer-administered questionnaire included detailed sexual and contraceptive histories, attitudes about sexuality, contraception, and fatherhood, and general demographic information. The self-administered portion focused on sensitive areas such as drug use and high-risk sexual activity (e.g., anal intercourse). The 1995 new cohort SAQ was administered by audio computer-assisted self-interview (A-CASI) or by paper and pencil instrument (PAPI).

 

In 1995, urine specimens were collected from respondents over age 18. These samples were tested in cooperation with the Centers for Disease Control and Prevention for the presence of Chlamydia trachomatis (chlamydia) or Neisseria gonorrhoeae (gonorrhea). This project provides unique, nationally representative data about the prevalence of two serious STDs, linked with detailed behavioral and demographic data about risk factors. This research effort may change the state of the art for both behavioral and epidemiological surveys for STDs and merits timely and careful analyses and publication of findings.

 

STATUS: The old cohort consisted of longitudinal data collected in 3 waves: 1,800 males age 15-19 in 1988, 1,676 males age 16-21 in 1990-91, and 1,377 males age 21-27 in 1995. The new cohort consisted of 1,729 males age 15-19 in 1995.

 

HOW TO ACCESS DATA: Data are available from the Sociometrics Corporation web site, or by calling 1-800-846-DISK.

 

WEB SITE: http://www.socio.com

 

CONTACT PERSON: Freya L. Sonestein
The Urban Institute
Washington, D.C. 20037
(202) 857-8546


TITLE: New Immigrant Survey - A Pilot Study

 

AGENCY/PROGRAM: National Institute for Child Health and Human Development, Immigration and Naturalization Service, National Science Foundation, National Institutes of Health

 

DESCRIPTION: The purpose of this pilot study is to design, implement, and evaluate alternative methods of tracking newly arrived U.S. immigrants over time that will lead to a multiple-cohort, retrospective as well as prospective, longitudinal survey. Data from this pilot survey will provide information on pre-immigration education, work, migration, marriage and fertility histories relevant to understanding assimilation in the U.S. Information will also be provided on economic status, schooling, health and children's well being, as well as preferences and attitudes to help understand and predict assimilation patterns. The pilot survey instrument has been translated into Spanish, Chinese, Russian, Polish, Korean and Vietnamese. In addition, some interviewers can speak Cantonese, Thai and Tagalog (a language spoken in Luzon, Philippines). If successful, this pilot study will lead to a multiple-cohort, retrospective as well as prospective, longitudinal study of U.S. immigrants. When conducted, data from the full survey should fill an important data gap and address policy-related issues in the field of immigration by assessing: 1) immigration laws; 2) the assimilation and experience of immigrants; as well as 3) the economic and social impact of immigration.

 

STATUS: A total of 1,227 legal immigrants and temporary immigrants were sampled from the INS record in the pilot study period from 1996-1997.

 

HOW TO ACCESS DATA: Not yet available

 

CONTACT PERSON: James P. Smith
RAND Corp
Santa Monica, CA 90407
(310) 393-0411 


TITLE: New Immigrant Study

ACRONYM: NIS

AGENCY/PROGRAM: National Institute for Child Health and Human Development, Immigrant and Naturalization Service, National Science Foundation, National Institutes of Health

DESCRIPTION: This study is the first comprehensive longitudinal survey of new legal immigrants to the United States ("green card" holders) based on a nationally representative sample drawn from the administrative records of the U.S. Immigration and Naturalization Service. It is a follow-up to a successful pilot project, the results of which inform all elements of the design of the full New Immigrant Survey. To monitor adaptation over time, the sample will be interviewed at regular intervals, starting in late May or early June 2003. To assess the immigrants' long-term impact, information will also be obtained about and from their children, both the immigrant children they brought with them and the U.S. citizen children born to them in the United States; on immigrants' families; on the academic abilities and skills of children in immigrant families; and on changes over time in health, economic status, schooling, use of governmental services, English language skills, and children's academic achievements. Interviews are to be conducted in 18 languages. The interview instrument is to be translated into 6 languages - Spanish, Chinese, Russian, Polish, Korean, and Vietnamese and interviews are to conducted in the immigrant's preferred language by a trained, bilingual interviewer. Long-term plans include monitoring changes across immigrant cohorts by periodically drawing new samples of new legal immigrants.

STATUS: Interviewing of the sample will begin in late May or early June 2003.

HOW TO ACCESS DATA: Not yet available.

CONTACT PERSON: James P. Smith
RAND Corp
Santa Monica, CA 90407
(310) 393-0411


TITLE: Puerto Rican Maternal and Infant Health Project

 

ACRONYM: PRMIHP

 

AGENCY/PROGRAM: National Institute for Child Health and Human Development, National Institutes of Health

 

DESCRIPTION: The high neonatal and post-neonatal mortality rates of Puerto Rican infants have led to the identification of this subgroup as a target for special attention by the Public Health Service. The survey provides the data necessary to examine this important health issue. Vital record information is supplemented with a follow-back survey of mothers. The data have been released as a public use file, which serves as a valuable resource for investigations of infant health among Puerto Ricans.

 

STATUS: 2,763 infants were surveyed in 1996-1997 from records of Puerto Rico and U.S. states with high concentrations of Puerto Ricans.

 

HOW TO ACCESS DATA: The data can be downloaded at the project website: http://www.pop.psu.edu/prmihs/prmihs.htm.

 

CONTACT PERSON: Nancy S. Landale
Population Research Institute
Pennsylvania State University
University Park, PA 16802-6211
(814) 863-7276