[ { "name": "CDC BRFSS", "publisher": "CDC / National Center for Chronic Disease Prevention and Health Promotion", "what_it_contains": "Annual telephone survey of health-related risk behaviors, chronic conditions (including a cognitive decline/caregiver module), and preventive service use.", "geography_level": "National, state, and (via SMART) select city/county", "years_covered": "1984-present (cognitive decline module varies by state/year)", "access": "open download", "url": "https://www.cdc.gov/brfss/index.html", "notes": "Verified live 2026-09-21; annual microdata files plus GIS/analysis tools; also indexed on HealthData.gov.", "why_useful_for_correlation": "State-level cognitive-decline and caregiver-burden self-report data, and the underlying source for most of the pct_diabetes/obesity/smoking/etc columns in panel_state.csv." }, { "name": "CDC WONDER", "publisher": "CDC / NCHS", "what_it_contains": "Ad-hoc mortality query system; underlying/multiple cause-of-death counts and rates by ICD-10 code (G30 = Alzheimer's), year, age, sex, race, state, county.", "geography_level": "National, state, county", "years_covered": "1968-present (detailed cause-of-death 1999-present)", "access": "open download", "url": "https://wonder.cdc.gov/", "notes": "Verified live 2026-09-21. Query interface is form-based/interactive; cannot be scraped via a simple GET request -- would need a scripted form submission to build a continuous year-by-year mortality series.", "why_useful_for_correlation": "The authoritative source for filling the mortality gaps left blank in timeseries_national.csv, and for cross-checking the Facts & Figures state mortality table." }, { "name": "NHANES", "publisher": "CDC / NCHS", "what_it_contains": "Combined interview and physical exam survey with labs, biospecimens, and (in later cycles) cognitive testing modules.", "geography_level": "National only (not state-representative)", "years_covered": "1960s (initial cycles), continuous since 1999; most recent public releases through 2021-2023", "access": "open download", "url": "https://www.cdc.gov/nchs/nhanes/index.html", "notes": "Verified live 2026-09-21.", "why_useful_for_correlation": "Biomarker/lab and cognitive-screen data for national-level covariates (e.g., cardiometabolic risk factors) against national AD trends." }, { "name": "NHATS (National Health and Aging Trends Study)", "publisher": "Johns Hopkins Bloomberg School of Public Health, funded by NIA", "what_it_contains": "Annual in-person interviews of Medicare beneficiaries 65+ on disability, cognitive impairment, dementia status, and late-life trajectories, linkable to Medicare claims.", "geography_level": "Nationally representative sample (respondent-level, not state-representative)", "years_covered": "2011-present (annual rounds)", "access": "registration", "url": "https://nhats.org/researcher/nhats", "notes": "Verified live 2026-09-21. Free registration + data-use terms required for public-use files; more sensitive/restricted files require a separate application.", "why_useful_for_correlation": "Individual-level dementia/disability trajectories linkable to Medicare claims -- strong for cost/utilization correlation work." }, { "name": "ADNI (Alzheimer's Disease Neuroimaging Initiative)", "publisher": "Multi-site consortium, coordinated via LONI/USC, funded by NIA", "what_it_contains": "Longitudinal MRI/PET imaging, biomarkers (CSF, blood, genetics), and clinical/cognitive data from ~2,500+ participants across the AD spectrum.", "geography_level": "Site-level, US and Canada (~60 sites), not population-representative", "years_covered": "2004-present (ADNI 1/GO/2/3/4 phases)", "access": "restricted application", "url": "https://adni.loni.usc.edu/", "notes": "Verified live 2026-09-21. Requires creating an LONI/IDA account, agreeing to the ADNI Data Use Agreement, and (for biospecimens) a separate formal application/review -- genuinely gated, not open download.", "why_useful_for_correlation": "Gold-standard imaging/biomarker cohort for validating disease-stage definitions used to interpret national prevalence estimates." }, { "name": "NACC (National Alzheimer's Coordinating Center)", "publisher": "University of Washington, funded by NIA, aggregating NIA-funded Alzheimer's Disease Research Centers (ADRCs)", "what_it_contains": "Centralized clinical, neuropathology, imaging, and biomarker data pooled from 37+ active ADRCs (56,000+ participants, 217,000+ clinical visits).", "geography_level": "Multi-site (25 states with active ADRCs), not population-representative", "years_covered": "~1984-present (UDS harmonized data primarily 2005-present)", "access": "registration", "url": "https://naccdata.org/", "notes": "Verified live 2026-09-21 via https://www.naccdata.org/data-request-process: submit a brief project request, sign an electronic Data Use Agreement (DUA), then receive a download link within ~3 business days -- a real gate but lighter-weight than ADNI's, not simply 'open download.'", "why_useful_for_correlation": "Clinically-adjudicated dementia diagnoses across research centers -- useful to sanity-check self-report/administrative prevalence estimates." }, { "name": "CMS ResDAC (Medicare/Medicaid claims research data)", "publisher": "CMS, technical assistance via University of Minnesota ResDAC", "what_it_contains": "Access point/documentation for Medicare (Parts A/B/C/D) and Medicaid claims, enrollment, and assessment (e.g., MDS) research-identifiable files.", "geography_level": "Beneficiary/claim level, aggregable to county/state/national", "years_covered": "Varies by file type; Medicare claims generally 1999-present", "access": "restricted application", "url": "https://resdac.org/", "notes": "Verified live 2026-09-21. Requires submitting a data request form plus a CMS Data Use Agreement (DUA) to CMS; CMS notes high request volume and processing delays.", "why_useful_for_correlation": "The actual source needed to split Medicare-only vs. Medicaid-only Alzheimer's spending, which the published Facts & Figures aggregates do not cleanly separate (see caveats on the *_spend_total_usd columns)." }, { "name": "IHME GBD (Global Burden of Disease)", "publisher": "Institute for Health Metrics and Evaluation, University of Washington", "what_it_contains": "Modeled estimates of deaths, DALYs, prevalence, and risk-factor attribution for Alzheimer's/dementia by cause.", "geography_level": "National and subnational (204 countries, 660 subnational locations)", "years_covered": "1990-2023 (GBD 2023 round)", "access": "registration", "url": "https://vizhub.healthdata.org/gbd-results/", "notes": "Direct fetch returned 403 (bot-blocked); confirmed via search that free registration/sign-in is required to download CSV extracts (up to 100,000 rows/request) -- the interactive viewing tool itself is public.", "why_useful_for_correlation": "Enables international/cross-national benchmarking of the US Alzheimer's burden trend against comparable modeled global estimates." }, { "name": "US Census / ACS", "publisher": "US Census Bureau", "what_it_contains": "Annual demographic, economic, and housing survey (ACS) plus intercensal population estimates by age; source for the 65+ denominator and most of the demographic/socioeconomic panel columns.", "geography_level": "National, state, county, tract (ACS 1-yr/5-yr)", "years_covered": "ACS ongoing since 2005; Population Estimates Program annual since 2000s", "access": "open download", "url": "https://www.census.gov/programs-surveys/acs", "notes": "Verified live 2026-09-21.", "why_useful_for_correlation": "Provides the population-65+ denominator required to compute per-capita AD prevalence/mortality rates by state/year, plus income, education, race, and poverty covariates." }, { "name": "County Health Rankings", "publisher": "University of Wisconsin Population Health Institute / Robert Wood Johnson Foundation", "what_it_contains": "County- and state-level composite health outcome and health-factor measures (mortality, morbidity, social determinants).", "geography_level": "County and state", "years_covered": "2010-present annual releases", "access": "open download", "url": "https://www.countyhealthrankings.org/", "notes": "Verified live 2026-09-21; web explorer confirmed open, no login required.", "why_useful_for_correlation": "County-level social determinants (income, education, access to care) to correlate against local Alzheimer's mortality/prevalence at finer geography than state." }, { "name": "Area Health Resources File (AHRF)", "publisher": "HRSA, Bureau of Health Workforce / National Center for Health Workforce Analysis", "what_it_contains": "6,000+ variables on health care professions, facilities, population characteristics, and health economics.", "geography_level": "County, state, national", "years_covered": "Multi-decade historical files; dashboard covers 2019-2024", "access": "open download", "url": "https://data.hrsa.gov/topics/health-workforce/ahrf", "notes": "Verified live 2026-09-21; downloadable in SAS/CSV/ASCII with no registration barrier found.", "why_useful_for_correlation": "County-level physician/geriatrician and long-term-care workforce supply data to correlate against the dementia_care_workforce_requirement policy variable and healthcare-access columns." }, { "name": "Alzheimer's Association state-level data (Facts and Figures)", "publisher": "Alzheimer's Association", "what_it_contains": "Annual state-by-state Alzheimer's prevalence, projected growth, deaths, caregiver, geriatrician-supply, Medicare/Medicaid spending, and workforce estimates.", "geography_level": "State (all 50 + DC)", "years_covered": "Annual editions, at least 2010-2026 confirmed", "access": "open download", "url": "https://www.alz.org/alzheimers-dementia/facts-figures", "notes": "Verified live 2026-09-21 (and the 2025 full-text edition was fetched directly as the primary source for panel_state.csv's alz_*, unpaid_caregiver_*, medicaid_dementia_spend_total_usd, geriatricians_count and medicare_percapita_ffs_payment_usd columns).", "why_useful_for_correlation": "The primary published state-level dataset underlying most of panel_state.csv's Alzheimer's-specific columns and timeseries_national.csv." }, { "name": "NIH RePORTER / RCDC Categorical Spending", "publisher": "NIH Office of Extramural Research", "what_it_contains": "Searchable database of NIH-funded grants/contracts, publications, and patents, including by RCDC disease category (Alzheimer's Disease, and Alzheimer's Disease and Related Dementias combined).", "geography_level": "Project/institution level, aggregable to state/national", "years_covered": "FY1985-present (ExPORTER bulk files); categorical spending back to FY2008, FY2019-2025 fetched directly for this project", "access": "open download", "url": "https://report.nih.gov/funding/categorical-spending/", "notes": "Verified live 2026-09-21 -- fetched directly as text and confirmed a static HTML table with columns for FY2019-FY2025 (values used in research_funding_nih_adrd_usd). ExPORTER (https://report.nih.gov/reporter) additionally offers bulk downloadable raw project-level data.", "why_useful_for_correlation": "Grant-level Alzheimer's research funding data; the direct source for the research_funding_nih_adrd_usd column in timeseries_national.csv." }, { "name": "ClinicalTrials.gov API", "publisher": "NIH National Library of Medicine", "what_it_contains": "Registered/results data for all US and international clinical trials, including condition, phase, status, enrollment, sponsor, location, and outcomes.", "geography_level": "Trial-site level, global (includes US state/city)", "years_covered": "1999-present (registry inception); ongoing", "access": "API", "url": "https://clinicaltrials.gov/data-api/api", "notes": "Verified via direct query 2026-09-21: GET https://clinicaltrials.gov/api/v2/studies?query.cond=Alzheimer&pageSize=1 returned valid structured JSON (NCT ID, status, design, outcomes, locations) -- fully open REST API v2, no key required.", "why_useful_for_correlation": "Tracks the AD drug-development pipeline (trial counts/phases by year) as a leading indicator alongside the fda_approved_alz_drugs_cumulative column." }, { "name": "EPA Air Quality System (AirData)", "publisher": "US Environmental Protection Agency", "what_it_contains": "Ambient air quality monitoring data including PM2.5 annual averages by monitor, county, and state (CBSA).", "geography_level": "Monitor, county, state, national", "years_covered": "1980-present (PM2.5 monitoring network established ~1999)", "access": "open download", "url": "https://www.epa.gov/outdoor-air-quality-data", "notes": "Confirmed the AirData download portal is publicly accessible; the pm25_avg_ugm3 column in panel_state.csv was sourced via America's Health Rankings' aggregation of this EPA data rather than pulled directly from AirData's raw file interface in this session.", "why_useful_for_correlation": "Raw monitor-level and county-level PM2.5 data would allow a finer-grained air-pollution correlate than the single state-average column included in panel_state.csv." }, { "name": "KFF State Health Facts", "publisher": "KFF (Kaiser Family Foundation)", "what_it_contains": "Aggregated state-by-state health policy indicators (insurance coverage, chronic disease prevalence, provider supply, hospital/nursing-home capacity), sourced from CDC BRFSS, ACS, AHA Annual Survey, and CMS.", "geography_level": "State and national", "years_covered": "Varies by indicator, generally 2019-2024", "access": "open download", "url": "https://www.kff.org/statedata/", "notes": "Verified live 2026-09-21; used as the primary aggregator for most of panel_state.csv's risk-factor and healthcare-access columns because it re-publishes CDC BRFSS/AHA data in clean, directly fetchable state tables (CDC's own BRFSS interactive tool is not simply scrapeable).", "why_useful_for_correlation": "Single consistent access point for many of the risk-factor and healthcare-capacity columns already included in the panel; useful for re-pulling fresher vintages later." }, { "name": "CMS Care Compare, Hospice - Provider Data", "publisher": "CMS (Centers for Medicare & Medicaid Services)", "what_it_contains": "Medicare-certified hospice facility directory with CAHPS Hospice Survey and clinical quality measures, one row per facility x measure (453,493 rows nationally as fetched).", "geography_level": "Facility-level (CCN), aggregated here to county via facility address", "years_covered": "2026 (August 2026 snapshot)", "access": "open download", "url": "https://data.cms.gov/provider-data/api/1/metastore/schemas/dataset/items/252m-zfp9", "notes": "Fetched/re-verified 2026-09-27 (see data/sources/cms_hospice/README.md); metastore endpoint re-confirmed live (HTTP 200) 2026-09-30. Deduplicated to 6,669 unique CCNs and matched to panel_county.csv by (state, normalized county name) -- 6,551/6,669 (98.2%) matched; the remainder are genuine source-file gaps (missing/placeholder county field) or territories outside the continental panel.", "why_useful_for_correlation": "Direct source for panel_county.csv's cms_hospice_facilities_count and cms_hospice_facilities_per_1000pop columns." }, { "name": "CMS Care Compare, Home Health Care Agencies", "publisher": "CMS (Centers for Medicare & Medicaid Services)", "what_it_contains": "Medicare-certified home health agency directory (~12,460 agencies), including services offered, star ratings, and outcome measures.", "geography_level": "Agency-level (ZIP code), mapped here to county via a Census ZCTA-to-county crosswalk", "years_covered": "2026 (July 2026 snapshot)", "access": "open download", "url": "https://data.cms.gov/provider-data/api/1/metastore/schemas/dataset/items/6jpm-sxkc", "notes": "Fetched/re-verified 2026-09-27 (see data/sources/cms_home_health/README.md); metastore endpoint re-confirmed live (HTTP 200) 2026-09-30. This CMS file carries only a ZIP code, no county field, so agencies were mapped ZIP -> county FIPS via the 2020 Census ZCTA-to-county relationship file, using the largest land-area overlap for ZCTAs spanning multiple counties -- 12,375/12,460 (99.3%) matched to a panel county; an approximate ZIP-based assignment, not the agency's legal county of record.", "why_useful_for_correlation": "Direct source for panel_county.csv's cms_home_health_agencies_count and cms_home_health_agencies_per_1000pop columns." } ]