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Population and Clinical Database Resources for NIDCD Mission Areas

This page describes examples of publicly available databases that NIDCD-funded scientists can access to conduct research relevant to NIDCD’s mission areas:

This list is not intended to be comprehensive.

Hearing and Balance


The Audiological and Genetic Database (AudGenDB)

The Audiological and Genetic Database (AudGenDB) is a medical and research database resource that supports qualified researchers studying pediatric hearing health. The database draws information from several sources, including electronic health records, audiological instruments, radiological imagery, clinical genetics results, and genomics research records, and makes them accessible to researchers using a powerful, intuitive, web-based query interface. By establishing AudGenDB, researchers and clinicians can more effectively address how underlying genetic and environmental factors influence the effectiveness and outcome of patient-directed therapies and interventions.

Relevance: The aim is to facilitate effective identification of pediatric patients at high risk for congenital or late onset hearing loss, based on direct assessment of the audiologic and otologic features of children with all forms of hearing loss, and characterization of the genetic basis for hearing loss. The goal is to promote research into the causes of pediatric hearing loss with the long-term aim of developing therapies to ameliorate or cure congenital deafness.

Sample size: N~175,000 children (2018).

Access:

  • Data is accessible after approval of an application.
  • For information on how to access the data, visit the AudGenDB website.

Sponsoring or supporting organization: NIDCD


The Early Childhood Longitudinal Study (ECLS)

The Early Childhood Longitudinal Study (ECLS) program is sponsored by the National Center for Education Statistics (NCES). It includes three cohorts: a birth cohort and two kindergarten cohorts (the kindergarten classes of 1998–1999 and 2010–2011). The birth cohort study (ECLS-B) followed a sample of children born in 2001 from birth through kindergarten; the first kindergarten study (ECLS-K) followed kindergarteners in the 1998–1999 school year through the eighth grade; the second kindergarten study (ECLS-K:2011) followed kindergartners in the 2010–2011 school year through the fifth grade. The ECLS provides information about the preparation of children for school and how children develop in relation to their family, early childhood, and school environments.

Relevance: Parents were asked about their children’s hearing and recent experiences, including earaches, diagnosed ear infections (otitis media), recent colds, and exposure to loud sounds or noise. In an embedded subsample (n=3,000+), children’s ears were visually examined to check for blockages. Then, audiometric thresholds were determined for each ear. Tympanometry was used to assess middle ear functioning in the embedded subsample.

Sample size:

  • N~18,170, ECLS-K: 2010–2011 (Kindergarten assessments in 2010–2011)
  • Selected other sample sizes in this longitudinal study: N~15,020 (Spring first grade); N~12,650 (Spring third grade); N~10,520 (Spring fifth grade)

Access:

  • Both public- and restricted-use files provide data at the individual child level.
  • Public-use files provide information for the general user, but do not include the hearing exam thresholds from the embedded subsample.
  • Questionnaire data are provided from parents, teachers, and school administrators at each longitudinal round (grade level) of the ECKLS-K:2010-11.

Users can download data, documentation, and set-up files for SAS, SPSS, and STATA from the NCES website.

Sponsoring or supporting organizations:

  • Administration on Children, Youth, and Families
  • U.S. Department of Health and Human Services including NIDCD/National Institutes of Health and several other Institutes and Centers
  • Economic Research Service, U.S. Department of Agriculture
  • Office of Special Education Programs, U.S. Department of Education

The National Longitudinal Study of Adolescent Health (Add Health)

The National Longitudinal Study of Adolescent to Adult Health (Add Health) is a longitudinal study of a nationally representative cohort of adolescents recruited in grades 7 through 12 in the United States during the 1994–1995 school year. The Add Health cohort has been followed into young adulthood with in-home interviews conducted in Waves I to V (I: 1994–1995; II: 1996; III: 2001–2002; IV: 2008–2009; and V: 2016–2018). In Wave V, participants were aged 32 to 42 and a mixed-mode protocol was used that included web-based surveys. Add Health combines longitudinal survey data on respondents' social, economic, psychological, and physical well-being with contextual data on the family, neighborhood, community, school, friendships, peer groups, and romantic relationships, providing unique opportunities to study how social environments and behaviors in adolescence are linked to health and achievement in young adulthood. A future Wave VI is planned with primary sponsorship from the National Institute on Aging (NIA), since subjects in this longitudinal cohort study will soon be over 40 years of age.

Waves I and II focused on factors that may influence adolescents’ health and risk behaviors. Wave III focused on experiences and behaviors related to decisions, behavior, and health in the transition to adulthood. Wave IV studied developmental and health trajectories from adolescence into adulthood, integrating social, behavioral, and biomedical sciences into its research objectives, design, data collection, and analysis. Wave V collected social, environmental, behavioral, and biological data to track the emergence of chronic diseases.

Relevance: Hearing-related questions were asked at Waves III, IV, and V (e.g., “Have you ever worn a hearing aid?” and “If you wear a hearing aid, describe your hearing without it”). Also, questions about tinnitus, balance, falls, voice, plus speech-language services during elementary school have been included in one or more waves.

Sample size:

  • Adolescents in grades 7–12, N=20,745 (Wave I, 1994–1995)
  • Adolescents in grades 8–12, N=14,738 (Wave II, 1996)
  • Young adults aged 18–26, N=15,197 (Wave III, 2001–2002)
  • Adults aged 24–32, N=15,701 (Wave IV, 2008-2009)
  • Adults aged 32–42, N=12,300 (Wave V, 2016–2018)

Access:

  • A subset of these data (approximately 33%) are available for public use.
  • Access to the full, restricted-use dataset can be requested via the Add Health website.

Sponsoring or supporting organizations:

  • Eunice Kennedy Shriver National Institute of Child Health and Human Development, lead NIH sponsor (1993–2019)
  • NIA, lead NIH sponsor (2020+)
  • NIDCD (1994-2020)
  • Several other NIH Institutes and Centers, plus other agencies and foundations

American Community Survey (ACS)

The American Community Survey (ACS) helps local officials, community leaders, and businesses understand the changes taking place in their communities. It is the premier source for detailed population and housing information about our nation. Originally, the content of the ACS was included as the “long form” in the decennial census. The ACS launched in 2005, replacing the once-a-decade census long form. The ACS design features ongoing monthly data collection aggregated on a yearly basis to enable annual data releases. By combining multiple years (typically, 5 years), the Census Bureau is able to release “period” estimates to produce reliable estimates for smaller areas such as counties or census tracts.

Through the ACS, we know more about jobs and occupations, educational attainment, veterans, whether people own or rent their homes, and other topics. Public officials, planners, and entrepreneurs use this information to assess the past and plan the future. Information from the survey generates data that help determine how more than $675 billion in federal and state funds are distributed each year.

Relevance: In 2008, ACS implemented six questions for reporting disability. These questions have been included in the National Health Interview Survey as part of the Family Disability Questions File since 2009. The hearing disability question is asked about each person in the household: “Is this person deaf or does he/she have serious difficulty hearing?”

Five other disability questions are included that ask about: (1) vision – blind or has serious difficulty seeing even when wearing glasses; (2) because of a physical, mental, or emotional condition, serious difficulty concentrating, remembering, or making decisions; (3) mobility – serious difficulty walking or climbing stairs; (4) difficulty dressing or bathing; and (5) because of a physical, mental, or emotional condition, difficulty doing errands alone such as visiting a doctor’s office or shopping.

Sample size: Approximately 3.54 million households (2019).

Access: Hearing disability data are available from 2008 to 2019. All publicly released data are available to download at the following webpages:

Sponsoring or supporting organization: United States Census Bureau


Behavioral Risk Factor Surveillance System (BRFSS)

The Behavioral Risk Factor Surveillance System (BRFSS) is the nation’s premier system of health-related telephone surveys that collect state data about U.S. residents regarding their health-related risk behaviors, chronic health conditions, and use of preventive services. It was established in 1984 with 15 states. BRFSS now collects data in all 50 states as well as the District of Columbia and three U.S. territories. BRFSS completes more than 400,000 adult interviews each year, making it the largest continuously conducted health survey system in the world.

Relevance: From 2013 to 2015, the Centers for Disease Control and Prevention’s (CDC) BRFSS collected data using five of the six disability questions; the question to identify a hearing disability (i.e., deaf or serious difficulty hearing) was not included. However, beginning in 2016, BRFSS included all six disability questions as part of the core component to assess disability status across the nation. The hearing disability question stated, “Are you deaf or do you have serious difficulty hearing?”

Sample size: N=418,268 (2019).

Access:

Sponsoring or supporting organizations:

  • CDC National Center for Chronic Disease Prevention and Health Promotion
  • Other CDC Centers
  • Health Resources and Services Administration
  • Administration on Aging
  • Department of Veterans Affairs
  • Substance Abuse and Mental Health Services Administration

Healthcare Cost and Utilization Project (HCUP)

The Healthcare Cost and Utilization Project (HCUP) is a family of health care databases developed through a federal-state-industry partnership, sponsored by the Agency for Healthcare Research and Quality (AHRQ). The HCUP brings together data collection efforts of states, hospital associations, private data organizations, and the federal government to create a national information resource of patient-level health care.

Nationwide HCUP Databases

HCUP's nationwide databases can be used to identify, track, and analyze national trends in health care utilization, access, charges, quality, and outcomes.

National (Nationwide) Inpatient Sample (NIS)

Kids’ Inpatient Database (KID)

Nationwide Ambulatory Surgery Sample (NASS)

Nationwide Emergency Department Sample (NEDS)

Nationwide Readmissions Database (NRD)

State-Specific HCUP Databases

HCUP's state-specific databases can be used to investigate state-specific and multi-state trends in health care utilization, access, charges, quality, and outcomes.

State Inpatient Databases (SID)

State Ambulatory Surgery and Services Databases (SASD)

State Emergency Department Databases (SEDD)

Relevance: The HCUP contains the largest collection of hospital care data in the United States, with all-payer, encounter-level information beginning in 1988. These databases enable research on health policy issues, including cost and quality of health services, medical practice patterns, access to health care programs, and outcomes of treatments at the national, state, and local levels.

Sample size: The inpatient data contained in the NIS represent more than 97% of inpatient discharges from community hospitals in the United States.

Access: The HCUP databases are available for purchase through the HCUP Central Distributor. Purchase price varies (between $150 to $1,000) depending on which dataset and year (student discounts).

Sponsoring or supporting organization: AHRQ


The Medical Expenditure Panel Survey (MEPS)

The Medical Expenditure Panel Survey (MEPS) is a set of large-scale surveys of families and individuals, their medical providers (doctors, hospitals, pharmacies, etc.), and employers across the United States. MEPS has two major components: the Household Component (HC) and the Insurance Component.

MEPS-HC is a nationally representative longitudinal survey that collects detailed information on health care utilization and expenditures, health insurance, and health status, as well as a wide variety of social, demographic, and economic characteristics for the civilian, noninstitutionalized population. MEPS-HC households are a subsample of households that participated in the National Health Interview Survey approximately 6 months to a year prior to MEPS.

Relevance: MEPS-HC collects detailed information for each person in the household, that is, demographic data, health conditions, health status, use of medical services, charges and source of payments, access to care, satisfaction with care, health insurance coverage, income, and employment. Examples of content:

  • Otitis media is reported as a condition bothering the person and in connection with health care utilization or disability days. The conditions reported are recorded verbatim and coded by professional coders to fully specified ICD-9-CM codes. Conditions with ICD-9 codes of 381 and 382 are classified as otitis media.
  • Hearing activity limitations while the person is wearing a hearing aid was asked; for example, any difficulty hearing and level of difficulty quantified by whether person can hear any speech at all (whether he or she is deaf), hear most of the things people say, or hear some of the things people say.
  • Expenditures are defined as payments from all sources for hospital inpatient care, ambulatory care provided in offices and hospital outpatient departments, care provided in emergency departments, as well as prescribed medicine purchases reported by respondents in the MEPS-HC. These expenditures do not include over-the-counter medications used for treatment of, for example, otitis media.

Sample size:

  • Families, N=11,924 (2019)
  • Persons, N=27,648 (2019)

Access: For more information about MEPS, call the MEPS information coordinator at the Agency for Healthcare Research and Quality (AHRQ) at 301-427-1656 or visit the MEPS website.

Sponsoring or supporting organizations:

  • AHRQ
  • National Center for Health Statistics

National Health and Nutrition Examination Survey (NHANES)

The National Health and Nutrition Examination Survey (NHANES) is a program of studies designed to assess the health and nutritional status of adults and children in the United States. This national survey is unique in that it combines health interviews and physical examinations. NHANES is a major program of the National Center for Health Statistics (NCHS), Centers for Disease Control and Prevention (CDC).

NHANES includes demographic, socioeconomic, dietary, and health-related questions. The examination component consists of various medical, dental, and physiological assessments and laboratory tests administered by highly trained health technicians and medical personnel.

Relevance: The Audiometry questionnaire provides self-reported information on hearing status, tinnitus (ringing in the ears), hearing screening history, use of hearing aids, other assistive hearing devices, and risk factors for hearing loss. The NHANES Audiometry Component consists of four parts: (1) pre-exam audiometric questionnaire, (2) brief otoscopic screening (physical) exam of the ear canals and eardrums, (3) tympanometry and acoustic reflexes, and (4) pure tone air conduction audiometry.

Balance questionnaires and examinations were conducted in the pre-pandemic NHANES, 2019-March 2020, paused, and then resumed September 2021.

Sample size:

  • Home interviews, N=9,971 (2015–2016)
  • All exam components, N=9,544 (2015–2016)
  • Audiometric exams, adults aged 20–69 years, N=4,582 (2015–2016)
  • Audiometric exams, children aged 6–19 and older adults aged 70+ years, N=3,131 (2017–March 2020)

Access: Data are publicly available on the NHANES webpage.

For access to restricted data, researchers must submit a research proposal to the NCHS Research Data Center (RDC). RDC is responsible for protecting the confidentiality of survey responses of study subjects or institutions, while providing access for statistical purposes.

Sponsoring or supporting organizations:

  • NIDCD
  • Other National Institutes of Health (NIH) Institutes and Centers, including the NIH Office of the Director; National Heart, Lung, and Blood Institute; National Institute of Diabetes and Digestive and Kidney Diseases; and National Institute on Alcohol Abuse and Alcoholism
  • CDC collaborators: National Center for Chronic Disease Prevention and Health Promotion; National Center for Immunization and Respiratory Diseases; National Center for HIV, Viral Hepatitis, STD, and TB Prevention; National Center on Birth Defects and Developmental Disabilities; National Center for Environmental Health; and National Institute for Occupational Safety & Health
  • Other federal agencies, including the U.S. Food and Drug Administration and U.S. Department of Agriculture

National Health Interview Survey (NHIS)

The National Health Interview Survey (NHIS) is an annual, cross-sectional survey providing nationally representative estimates on a wide range of health status and utilization measures among the civilian (non-military), non-institutionalized population of the United States. Each annual data set can be used to examine the disease burden and access to care that individuals and families are currently experiencing in the United States. NHIS is a principal source of national data used to track progress in meeting each decade’s U.S. Healthy People goals.

Relevance: NHIS includes supplemental questionnaires and periodic modules on topics of current interest. For example, adult hearing supplements were included in 2002, 2007, and 2014; adult dizziness and balance supplements were included in 2008 and 2016; and a voice, speech, and language supplement and children’s balance supplement were included in 2012. The 2021 NHIS Taste and Smell module included questions on impairments of taste (gustation) and smell (olfaction) and on the COVID-19 pandemic. The 2022 NHIS Voice, Speech, and Language module is collecting data now. These supplements and modules have been coordinated and sponsored by NIDCD.

Sample size:

  • Households, N=30,673 (2021)
  • Adults, N=29,482 (2021)
  • Children, N=8,261 (2021)

Access: These annual datasets are publicly available on the NHIS webpage.

Sponsoring or supporting organizations:

  • NIDCD
  • Other NIH Institutes and Centers, including the National Cancer Institute and National Institute of Diabetes and Digestive and Kidney Diseases
  • Centers for Disease Control and Prevention: National Center for Chronic Disease Prevention and Health Promotion, and National Center for Immunization and Respiratory Diseases
  • Other federal agencies, including the U.S. Food and Drug Administration and U.S. Department of Agriculture

Survey of Income and Program Participation (SIPP)

Survey of Income and Program Participation (SIPP) is a longitudinal survey that collects information on topics such as poverty, income, employment, and health insurance coverage. SIPP core content covers demographic characteristics, work experience, earnings, program participation, transfer income, and asset income. Each interview wave contains additional topical content, including one or more topical modules, allowing the Census Bureau to address a range of subjects.

Relevance: Adults are asked the standard Activities of Daily Living and Instrumental Activities of Daily Living battery of questions. Questions address physical and mental conditions affecting the respondent, the use of mobility aids, vision and hearing impairments, speech difficulties, lifting and aerobic difficulties, and the ability to function independently within the home.

SIPP is one of the few national surveys that regularly collects data to estimate the number of people in the United States with hearing loss or deafness. This survey has shown that more than half of all persons with hearing loss or deafness are 65 years or older and less than 4% are children under 18 years of age. These findings are based on those who report difficulty hearing “normal conversation” and do not include the larger population of persons affected with hearing loss outside the circumstances of normal conversation, for example, in noisy environments.

Sample size: Ranging from N~14,000 to N~52,000 interviewed households (2004–2020).

Access: These data are publicly available from the SIPP website.

Sponsoring or supporting organization: United States Census Bureau


Taste and Smell


National Health and Nutrition Examination Survey (NHANES)

The National Health and Nutrition Examination Survey (NHANES) is a program of studies designed to assess the health and nutritional status of adults and children in the United States. See a full description of NHANES in the Hearing and Balance section of this page.

Relevance: The taste and smell exam measured the ability to taste and smell, using an odor identification test and salt and quinine taste testing. The objectives of this component were the following:

  1. Provide reference data for adults aged 40 or older.
  2. Examine variations in the ability to smell and to taste salt and bitter, and analyze associations with hypertension, nutritional, and obesity data.
  3. Estimate the prevalence among adults of not being able to recognize odors of smoke and natural gas, that are important early warning signals for home safety hazards.

An in-home questionnaire about the senses of taste and smell was administered in NHANES 2011–2014. The taste and smell examinations were conducted beginning in 2012 for a subsample and then the full adult sample of those 40 years of age and older in NHANES, 2013–2014.

Sample size: Adults 40+ years of age, N=3,227 (2013–2014).

Access: These data are publicly available on the NHANES webpage.

Sponsoring or supporting organization: NIDCD


National Social Life, Health, and Aging Project (NSHAP)

The National Social Life, Health and Aging Project (NSHAP) is the first population-based study of health and social factors on a national scale, aiming to understand the well-being of older, community-dwelling Americans by examining the interactions among physical health, illness, medication use, cognitive function, emotional health, sensory function, health behaviors, and social connectedness.

Relevance: Among the 3,005 Wave 1 respondents, 2,928 had complete data for the key variables considered here (olfactory identification score, age, gender, and race). By design, in Wave 2, 1,944 of these respondents were randomized to receive repeat olfactory testing. Of these, 458 were deceased, too ill to participate, could not be located, or refused to be interviewed. Only 49 respondents (2.5%) refused olfactory testing, while one respondent discontinued the interview prior to the olfaction module. This yielded 1,436 respondents with olfaction data from both waves (73.9%; 694 males and 742 females; ages 57–85 at Wave 1).

All respondents in Wave 1 and a randomly selected two-thirds of the sample in Wave 2 were asked to complete a five-item, validated odor identification test presented using felt-tipped pens (Burghart Messtechnik, Wedel, Germany). Briefly, five odorants were presented one at a time. Respondents were asked to identify each by choosing from a set of four picture/word prompts in a forced choice protocol; refusals were coded as incorrect. The target odors were rose, leather, orange, fish, and peppermint.

Sample size: Older adults, N=2,928 (Wave 1).

Access: This dataset is maintained and distributed by the National Archive of Computerized Data on Aging (NACDA), the aging program within the Inter-university Consortium for Political and Social Research. The NACDA is sponsored by the National Institute on Aging (NIA) at NIH.

Sponsoring or supporting organizations:

  • NIH, including NIA, the Office of Women’s Health Research, the Office of AIDS Research, and the Office of Behavioral and Social Sciences Research
  • McHugh Otolaryngology Research Fund, the American Geriatrics Society, the Center on the Demography and Economics of Aging, a Mellon Foundation Social Sciences Dissertation-Year Fellowship, and the Institute of Translational Medicine at the University of Chicago

Voice, Speech, and Language


FluencyBank: A new resource for fluency research and practice

This project examines the relationship between the fluency of children's speech and their language skills. The National Science Foundation (NSF) and NIDCD provided funding to establish FluencyBank.

Relevance: FluencyBank is the first multi-investigator effort to provide data sharing for describing the development of fluency. It seeks to track children’s first words to adult-like utterances, and to track the profiles of atypical fluency development across a range of ages and language communities.

Sample size: 90 children (typical monolingual, bilingual, stuttering, and late-talking) over the course of 3 years to track language and fluency growth.

Access:

  • Access to the research data in FluencyBank is password protected and restricted to members of the FluencyBank consortium group.
  • Data in the Teaching section of the FluencyBank site is open access and does NOT require membership or a password.
  • FluencyBank will also provide a permanent home and data-sharing access point for speech samples collected as part of projects involving adult stuttering and other communication disorders.

For more information, visit the FluencyBank webpage.

Sponsoring or supporting organization: FluencyBank development was supported both by NIDCD, with its clinical focus on research, as well as NSF, which has a focus on understanding typical speech/language production and comprehension.


The National Longitudinal Study of Adolescent Health (Add Health)

The National Longitudinal Study of Adolescent to Adult Health (Add Health) is a longitudinal study of a nationally representative cohort of adolescents recruited in grades 7 through 12 in the United States during the 1994–1995 school year. See a full description of Add Health in the Hearing and Balance section of this page.

Relevance: Voice and speech questions were asked in Wave IV:

  • Do you have a problem with stuttering or stammering?
  • How would you describe your stuttering or stammering at this time?
  • In the past 12 months, have you had any problem with your voice? By any problem, we mean was there any time when your voice was hoarse, raspy, breathy, weak, or, generally, did not work, perform, or sound as you feel it normally would?
  • In the past 12 months, how often has your voice been hoarse, raspy, or breathy?
  • In the past 12 months, how often have you had difficulty being heard or trouble projecting your voice?

Sample size:

  • Adults aged 24–32, N=15,701 (Wave IV, 2008)

Access: These data are approximately 33% available for public use.

Visit the Add Health website for instructions on how to submit a request for data access.

Sponsoring or supporting organizations:

  • NIDCD
  • Eunice Kennedy Shriver National Institute of Child Health and Human Development, lead NIH sponsor (1993–2019)
  • National Institute on Aging (NIA), lead NIH sponsor (2020+)
  • Several other NIH Institutes and Centers, plus other agencies and foundations

AphasiaBank: A Resource for Clinicians

AphasiaBank has used a standardized protocol to collect narrative, procedural, personal, and descriptive discourse from 290 persons with aphasia, as well as 190 control participants.

Relevance: The language in the videos is transcribed in the Codes for the Human Analysis of Transcripts format and coded for analysis with Computerized Language ANalysis (CLAN) programs, which can perform a wide variety of language analyses. The database and the CLAN programs are freely available to aphasia researchers and clinicians for educational, clinical, and scholarly uses.

Sample size:

  • Aphasia participants, N=290
  • Control participants, N=190

Access:

  • Access to the data in AphasiaBank is restricted to members of the AphasiaBank consortium group.
  • Researchers, educators, and clinicians working with aphasia who are interested in joining the consortium should read the Ground Rules and then send an email to macw@cmu.edu with contact information and affiliation.

For more information, visit the AphasiaBank website.

Sponsoring or supporting organization: NIDCD


National Health Interview Survey (NHIS)

The National Health Interview Survey (NHIS) is an annual, cross-sectional survey intended to provide nationally representative estimates on a wide range of health status and utilization measures among the civilian (non-military), non-institutionalized population of the United States. See a full description of NHIS in the Hearing and Balance section of this page.

Relevance: The Child Voice, Speech and Language Supplement: Child Communication Disorders (CCD) included in the 2012 NHIS is the first-ever, large-scale child communication supplement in the survey. The CCD Supplement encompassed the areas of voice, swallowing, speech, and language problems for sample children aged 3–17 years. Data on the condition within the past 12 months, causes, age of onset, and severity are included for each CCD area. Further, detailed information on health care utilization as a result of the child’s voice, swallowing, speech, or language problem is available in CCD.

A companion Adult Voice, Speech and Language Supplement: Adult Communication Disorders (ACD) included in the 2012 NHIS, is the first-ever, large-scale adult communication supplement in the survey. The ACD Supplement encompasses the domains of voice, swallowing, speech, and language problems for sample adults aged 18 years and older. Data about the causes, age of onset, severity, and health care utilization are included for each domain. Further, detailed information on health care utilization as a result of the voice, swallowing, speech, or language problem is available in the ACD.

Sample size:

  • Children, N=13,275 (2012)
  • Adults, N=34,525 (2012)

Access: These data are publicly available on the NHIS webpage.

Sponsoring or supporting organization: NIDCD


All NIDCD Mission Areas or Overall Disability


Database of Genotypes and Phenotypes (dbGaP)

The Database of Genotypes and Phenotypes (dbGaP) was developed to archive and distribute the results of studies that have investigated the interaction of genotype and phenotype. Such studies include genome-wide association studies, medical sequencing, molecular diagnostic assays, as well as associations between genotype and non-clinical traits. The advent of high-throughput, cost-effective methods for genotyping and sequencing has provided powerful tools that allow for the generation of the massive amount of genotypic data required to make these analyses possible.

Relevance: One example is the Framingham Cohort: The Epidemiology of Presbycusis–Hearing Test, a sub-study of Framingham SHARe. The Cohort Exam 22 and Offspring Exam included:

  • Examination of the epidemiology of presbycusis in relation to biomedical risk factors with the goal of determining the relative contributions of age-related degeneration and age-related diseases to: (1) presbycusis in general; (2) the major sites of dysfunction, that is, cochlear, retrococlear, and central; and (3) the specific types of presbycusis, that is, sensory, neural, strial, and conductive.
  • The first 15-year longitudinal analysis of the incidence of hearing loss in elderly men and women.
  • A detailed questionnaire/history form as well as an inventory called the Hearing Handicap Inventory for the Elderly.
  • Testing was most often done in two parts. The first part included questionnaires, a basic hearing assessment, and evaluation of middle ear function. Part two, usually completed on a subsequent date, included central auditory tests.
  • In addition to looking at biomedical risk factors of presbycusis, the goals of Offspring Exam 6 included identifying families with evidence of genetic transmission of presbycusis and the relation of hearing levels and cognitive function.

There are many additional databases in dbGaP, with examples listed below by the examined metric.

Hearing loss

Tinnitus

Dizziness

Smell (olfaction)

Taste (gustation)

Voice

Speech

Language

Sample size: Consented adults, N=669 in Framingham Study (example above).

Access: Access restrictions or requirements vary; for example, dbGaP provides two levels of access—open and controlled—in order to allow broad release of non-sensitive data, while providing oversight and investigator accountability for sensitive data sets involving personal health information. Summaries of studies and the contents of measured variables as well as original study documentary text are generally available to the public, while access to individual-level data including phenotypic data tables and genotypes require varying levels of authorization.

For more information, visit the dbGaP webpage.

Sponsoring or supporting organization: The National Center for Biotechnology Information created dbGaP to support investigator access to data from these initiatives at NIH and elsewhere.


Disability and Health Data System (DHDS)

The Disability and Health Data System (DHDS) is an online source of state-level data on adults with disabilities. Users can access information on six functional disability types:

  • Cognitive (serious difficulty concentrating, remembering, or making decisions)
  • Hearing (serious difficulty hearing or deafness)
  • Mobility (serious difficulty walking or climbing stairs)
  • Vision (serious difficulty seeing or blindness)
  • Self-care (difficulty dressing or bathing)
  • Independent living (difficulty doing errands alone)

Data on more than 30 health topics among adults with or without disabilities can be explored in DHDS, including smoking, obesity, heart disease, and diabetes.

Users can customize data maps, charts, and tables, making it easy to see information about their state or region. They can identify health differences between adults with and without disabilities overall, and by age, sex, and race/ethnicity. Data can be used in presentations, reports, grant applications, or to inform decision-makers.

Relevance: The DHDS is based on the Behavioral Risk Factor Surveillance System (BRFSS) annual state-based survey (described above) and can be used to answer questions, such as:

  • What is the percentage of adults with disabilities (e.g., hearing, mobility, cognition disabilities) in each state?
  • How does the percentage of adults with disabilities vary by age, sex, and race/ethnicity in each state?
  • How does the state percentage compare with the national percentage? With percentages in neighboring states?
  • Does the percentage of adults with key health indicators, such as obesity, less physical activity, and smoking vary across different functional disability types? Among adults with and without disabilities?

Sample size: Adults, N=418,268 (2019 BRFSS).

Access:

Sponsoring or supporting organizations:

  • Centers for Disease Control and Prevention (CDC), National Center for Chronic Disease Prevention and Health Promotion
  • Other CDC Centers
  • Health Resources and Services Administration
  • Administration on Aging
  • Department of Veterans Affairs
  • Substance Abuse and Mental Health Services Administration

Healthy People 2030 – Hearing and Other Sensory or Communication Disorders (HOSCD) Topic Area

Healthy People (HP) 2030 includes a wide range of objectives developed by workgroups made up of subject matter experts in specific topics. Most Healthy People objectives measure progress toward a target over time, but some aren’t measurable or have other limitations. HP 2030 focuses on prevention, diagnosis, and treatment for health disorders in people of all ages. Sensory or communication disorders can have a major impact on social, emotional, and physical well-being. Some groups have a higher risk, including people with low incomes, people who work in certain industries, and older adults. People who are diagnosed or treated later often have worse outcomes.

Many people in the United States will have a sensory or communication disorder in their lifetime. Preventive care, like hearing screenings for newborns and hearing exams in children and adults, are critical for finding and treating these disorders early. Also, strategies to increase hearing protection can help prevent noise-induced hearing loss.

Core objectives: Most Healthy People 2030 objectives are core, or measurable, objectives that have targets established for the decade. These objectives were chosen as high-priority public health issues and are associated with evidence-based interventions. Core objectives have valid, reliable, nationally representative data sources, including baseline data. Most have a measure of variability to assess statistical significance. Core objectives will be tracked for three or more time periods across the decade. Interim progress toward achieving objectives will be classified as:

  • Baseline only. No data beyond initial baseline, so don't know if progress is occurring.
  • Target met or exceeded. The target set at the beginning of the decade is achieved.
  • Improving. Progress made toward meeting the target.
  • Little or no detectable change. Unable to determine progress or if losing ground.
  • Getting worse. Further from meeting the target than at the beginning of the decade.

Relevance: A workgroup formed by NIDCD, in consultation with other interested governmental and outside subject matter experts, developed the HP core objectives for hearing, balance, taste, smell, voice, speech, and language, which were reviewed and approved by the Federal Interagency Workgroup (FIW). The National Eye Institute sponsored a workgroup that developed the HP objectives for vision. Mid-decade progress assessments for sensory and communication disorders are reviewed by participating U.S. Department of Health and Human Services (DHHS) staff and HP Workgroup leaders in joint public webinars.

Sample size: Varies depending upon the national data source used for tracking; the majority of HP objectives are tracked using the National Health Interview Survey or the National Health and Nutrition Examination Survey.

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Sponsoring or supporting organizations: FIW has led the HP 2030 development effort. It has drawn on the diverse backgrounds of its member agencies, lessons learned from past HP efforts, broad-based public comment, and the work of the Secretary's Advisory Committee on National Health Promotion and Disease Prevention Objectives for 2030. The FIW membership includes health promotion and prevention staff from major components of DHHS. For example, the Centers for Disease Control and Prevention, U.S. Food and Drug Administration, Health Resources and Services Administration, NIH, and other federal agencies.

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