Government & Public-Sector Data Sources for Pediatric DPC

Map of US public-sector data sources for Starlight Practice (pediatric DPC EMR + parent app + AI substrate). Covers NIH/NLM, CDC, FDA, HRSA, AHRQ, CMS, state public-health, and standardized vocabularies. Paid commercial sources (UpToDate, Lexicomp, Nelson's, Harriet Lane, paywalled AAP Red Book) are tracked separately in /docs/data-sources/commercial.md.

Verification

URLs flagged "unverified this session" mean WebFetch was blocked at compile time. They reflect canonical .gov endpoints from training; re-verify before crawling.

Priority

• MUST-HAVE — launch blocker
• NICE-TO-HAVE — v1.x AI grounding / CDS
• WAIT — analytics / research later

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1. NIH / NLM Properties

1.1 PubMed / MEDLINE

• Description: ~37M citations & abstracts of biomedical literature; the backbone reference corpus.
• URL: https://pubmed.ncbi.nlm.nih.gov/ — unverified this session
• Access: E-utilities API (eutils.ncbi.nlm.nih.gov), bulk FTP (annual baseline + daily update files), web UI.
• Cost: Free.
• Format: XML (PubMed DTD), JSON via E-utils, MEDLINE flat-file.
• Cadence: Daily updates, annual baseline reload (December).
• License: US Government work / public domain for NLM-produced metadata. Abstracts may carry copyright by publishers — redistribution of full abstracts in derivative products requires care.
• Pediatric relevance: Filter by MeSH Pediatrics, Child, Infant, Adolescent for AI grounding on age-specific evidence.
• Priority: MUST-HAVE for AI substrate.

1.2 PubMed Central (PMC) Open Access Subset

• Description: Full-text articles, of which ~5M+ are in the OA subset (CC-BY family licenses).
• URL: https://www.ncbi.nlm.nih.gov/pmc/ — unverified this session
• Access: Bulk FTP (ftp.ncbi.nlm.nih.gov/pub/pmc/), OAI-PMH, E-utilities, OA Web Service API.
• Cost: Free.
• Format: NXML (JATS XML), PDF, plain text, package tarballs.
• Cadence: Daily.
• License: Per-article (CC-BY, CC-BY-NC, CC0); the OA subset is explicitly redistributable. The non-OA subset is read-only.
• Pediatric relevance: Full-text RAG corpus; superior to abstracts for clinical question answering.
• Priority: MUST-HAVE.

1.3 ClinicalTrials.gov

• Description: Registry & results database of ~500K clinical studies worldwide.
• URL: https://clinicaltrials.gov/ ; API: https://clinicaltrials.gov/data-api/api — unverified this session
• Access: REST API v2 (JSON), bulk download (XML/JSON ZIPs), CSV exports.
• Cost: Free.
• Format: JSON, XML, CSV.
• Cadence: Real-time / daily.
• License: Public domain (US Government).
• Pediatric relevance: Filter StdAge=Child for pediatric trials; useful for parent-app "trials near you" feature and for sourcing rare-disease cohorts.
• Priority: NICE-TO-HAVE.

1.4 MedlinePlus / MedlinePlus Connect

• Description: Consumer-facing health information; Connect lets EHRs link diagnosis/medication codes to patient-friendly content.
• URL: https://medlineplus.gov/ ; Connect: https://medlineplus.gov/connect/ — unverified this session
• Access: Connect Web Service (XML/JSON), Health Topics XML feed, bulk download.
• Cost: Free.
• Format: XML, JSON, HTML.
• Cadence: Continuous.
• License: Most NLM-authored content is public domain; some embedded images/encyclopedia entries are licensed (A.D.A.M.) and not redistributable.
• Pediatric relevance: Patient-education content keyed off ICD-10/RxNorm/LOINC — perfect for parent app "learn about this condition/med/lab" surfaces.
• Priority: MUST-HAVE for parent app.

1.5 RxNorm (NLM)

• Description: Normalized naming & codes for clinical drugs in the US.
• URL: https://www.nlm.nih.gov/research/umls/rxnorm/ — unverified this session
• Access: Monthly RRF release (UMLS download), RxNav REST API, RxClass, RxMix.
• Cost: Free.
• Format: RRF (pipe-delimited), JSON via RxNav.
• Cadence: Monthly full release; weekly updates via RxNav.
• License: UMLS Metathesaurus License (free, requires UMLS account); RxNorm itself is unrestricted.
• Pediatric relevance: Required for e-prescribing; pediatric weight-based dosing wiring; mapping to FDA NDC.
• Priority: MUST-HAVE.

1.6 MeSH (Medical Subject Headings)

• Description: Controlled vocabulary of biomedical concepts; powers PubMed indexing.
• URL: https://www.nlm.nih.gov/mesh/ — unverified this session
• Access: Annual XML/RDF download, SPARQL endpoint (id.nlm.nih.gov/mesh).
• Cost: Free.
• Format: XML, RDF/Turtle, ASCII.
• Cadence: Annual (November).
• License: Public domain.
• Pediatric relevance: Concept tagging for AI corpora; faceted search of literature by age subgroups.
• Priority: NICE-TO-HAVE.

1.7 UMLS Metathesaurus

• Description: Cross-walks 200+ vocabularies (SNOMED, ICD, LOINC, RxNorm, MeSH, etc.) into unified concepts (CUIs).
• URL: https://www.nlm.nih.gov/research/umls/ — unverified this session
• Access: Bulk RRF download, REST API.
• Cost: Free with UMLS license (free account).
• Format: RRF, JSON.
• Cadence: Two releases/year (May, November).
• License: Free for US users; some source vocabularies have restrictions inherited (e.g., CPT). Must accept UMLS license.
• Pediatric relevance: The single most important crosswalk asset for clinical interoperability.
• Priority: MUST-HAVE.

1.8 NCBI Bookshelf (incl. GeneReviews, StatPearls)

• Description: Free full-text books and reports; GeneReviews is the gold standard for genetic conditions; StatPearls is open-access clinical reference.
• URL: https://www.ncbi.nlm.nih.gov/books/ — unverified this session
• Access: OAI-PMH, bulk FTP, E-utilities.
• Cost: Free.
• Format: NXML, PDF.
• Cadence: Continuous.
• License: Per-title; many CC-BY or NLM public domain. StatPearls is CC-BY-NC-ND — commercial redistribution restricted.
• Pediatric relevance: GeneReviews for inborn errors of metabolism, syndromic conditions; StatPearls for general peds reference.
• Priority: NICE-TO-HAVE (verify StatPearls license fits commercial use).

1.9 DailyMed (NLM)

• Description: Authoritative FDA-submitted drug labeling (Structured Product Labels).
• URL: https://dailymed.nlm.nih.gov/ — unverified this session
• Access: REST/SOAP API, bulk download (FTP).
• Cost: Free.
• Format: SPL (HL7 XML), PDF, JSON via API.
• Cadence: Daily.
• License: Public domain.
• Pediatric relevance: Pediatric Use sections, Boxed Warnings, Dosage & Administration — required for safe e-prescribing.
• Priority: MUST-HAVE.

1.10 Pillbox (retired Jan 2021)

Use DailyMed images going forward. WAIT / archival.

1.11 NLM Value Set Authority Center (VSAC)

• Description: Authoritative repository of value sets used in eCQMs (electronic Clinical Quality Measures).
• URL: https://vsac.nlm.nih.gov/ — unverified this session
• Access: API (FHIR ValueSet, SVS), web download.
• Cost: Free with UMLS license.
• Format: FHIR JSON/XML, SVS XML, Excel.
• Cadence: Continuous.
• License: Per-source; SNOMED, LOINC, RxNorm value sets are redistributable under their parent licenses.
• Pediatric relevance: Pre-built CMS/ONC-blessed value sets for well-child visits, immunizations, BMI, lead screening, etc.
• Priority: MUST-HAVE for quality measure reporting.

1.12 NIH Common Data Elements (CDE) Repository

• URL: https://cde.nlm.nih.gov/ — unverified this session
• Access: Web UI, REST API.
• Cost: Free.
• Pediatric relevance: Standardized question/answer items for assessments (PROMIS, NIH Toolbox).
• Priority: NICE-TO-HAVE.

1.13 NIH PROMIS / NIH Toolbox

• Description: Patient-Reported Outcomes Measurement Info System with pediatric and parent-proxy short forms.
• URL: https://www.healthmeasures.net/ — unverified this session (NIH-funded, hosted at Northwestern).
• Access: Free instruments via registration; Assessment Center API.
• License: Free for use; redistribution of items with attribution.
• Pediatric relevance: Validated peds PROs (anxiety, depression, mobility, peer relationships).
• Priority: NICE-TO-HAVE.

1.14 dbGaP, GenBank, ClinVar, MedGen

NCBI databases via E-utilities/FTP; free (dbGaP individual-level requires controlled access). ClinVar/MedGen useful for newborn-screen follow-up. WAIT unless we add genomics.

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2. CDC Properties

2.1 CDC WONDER

• Description: Online query system for mortality, natality, cancer, STD, TB, environmental data.
• URL: https://wonder.cdc.gov/ — unverified this session
• Access: Web UI; programmatic XML POST API (rate-limited; deprecated for some datasets).
• Cost: Free.
• Format: TSV, XML.
• Cadence: Annual / quarterly depending on dataset.
• License: Public domain (US Government).
• Pediatric relevance: Infant mortality, birth defects, leading causes of death by age, vaccine-preventable disease counts.
• Priority: NICE-TO-HAVE (population baselines for synthetic patient generation).

2.2 CDC Growth Charts (2000)

• Description: US growth references for ages 2–20 (height-for-age, weight-for-age, BMI-for-age, weight-for-stature). Used above age 2.
• URL: https://www.cdc.gov/growthcharts/ ; data files: https://www.cdc.gov/growthcharts/cdc-data-files.htm — unverified this session
• Access: Direct CSV/Excel download of L, M, S parameters and percentile tables; PDF charts.
• Cost: Free.
• Format: CSV, Excel, PDF (for printable charts).
• Cadence: Static (2000 reference; stable).
• License: Public domain.
• Pediatric relevance: Core — every well-child visit calculates and plots growth. LMS parameters enable z-score / percentile calculation.
• Priority: MUST-HAVE.

2.3 WHO Growth Standards (CDC-hosted & recommended for 0–2)

• Description: WHO Multicentre Growth Reference Study; CDC recommends WHO charts for birth–age 24 months, then CDC charts after.
• URL: https://www.cdc.gov/growthcharts/who-growth-charts.htm ; primary: https://www.who.int/tools/child-growth-standards — unverified this session
• Access: Direct download of LMS tables.
• Cost: Free.
• Format: Excel, TXT.
• License: WHO terms allow non-commercial & commercial use with attribution; CDC-hosted copies are public domain.
• Pediatric relevance: Core for infants/toddlers.
• Priority: MUST-HAVE.

2.4 CDC/AAP/ACIP Immunization Schedules

• Description: Annual recommended childhood and adolescent immunization schedules + catch-up schedules.
• URL: https://www.cdc.gov/vaccines/hcp/imz-schedules/ — unverified this session
• Access: PDF, HTML; CDC Immunization Schedule API/JSON has been published in recent years (verify currency).
• Cost: Free.
• Format: PDF, HTML; machine-readable schedule (JSON) experimental.
• Cadence: Annual (released early each year by ACIP).
• License: Public domain.
• Pediatric relevance: Core — CDS for due/overdue immunizations.
• Priority: MUST-HAVE. Pair with CDS Connect logic and HL7 CDS for Immunizations (ICE/COVE).

2.5 CDC ACIP Vaccine Recommendations & Statements

• URL: https://www.cdc.gov/vaccines/acip/ — unverified this session
• Access: PDF, HTML, MMWR.
• Cost: Free.
• License: Public domain.
• Priority: MUST-HAVE (full text grounding for AI).

2.6 CVX / MVX Code Sets (CDC IIS)

• Description: CVX (vaccine-administered codes) and MVX (manufacturer codes) used in HL7 immunization messaging.
• URL: https://www2a.cdc.gov/vaccines/iis/iisstandards/vaccines.asp?rpt=cvx — unverified this session
• Access: HTML tables, downloadable XML.
• Cost: Free.
• License: Public domain.
• Priority: MUST-HAVE for vaccine recording.

2.7 Immunization Information Systems (IIS) — State Registries

• Description: Per-state registries (every state + DC has one). Bidirectional HL7 v2.5.1 messaging is required for "Public Health Reporting" in CMS Promoting Interoperability.
• URL: https://www.cdc.gov/vaccines/programs/iis/contacts-locate-records.html — unverified this session
• Access: Per-state onboarding (HL7 v2 over SOAP/MLLP/SFTP); CDC AIRA model docs at repository.immregistries.org — unverified this session
• Cost: Free (regulatory).
• Format: HL7 v2.5.1 VXU/QBP/RSP.
• License: N/A (regulated reporting).
• Pediatric relevance: Core — required for full vaccine history queries and meaningful use.
• Priority: MUST-HAVE (state-by-state rollout).

2.8 VAERS (Vaccine Adverse Event Reporting System)

• Description: Co-managed by CDC & FDA; passive surveillance of post-vaccination adverse events.
• URL: https://vaers.hhs.gov/data.html — unverified this session
• Access: CSV downloads (annual + current year), CDC WONDER VAERS query.
• Cost: Free.
• Format: CSV.
• Cadence: Weekly.
• License: Public domain (PII redacted).
• Pediatric relevance: Background-rate context for vaccine safety counseling.
• Priority: NICE-TO-HAVE.

2.9 NHANES (National Health and Nutrition Examination Survey)

• URL: https://www.cdc.gov/nchs/nhanes/ — unverified this session
• Access: Bulk SAS XPT & CSV files per cycle.
• Cost: Free.
• Format: SAS XPT, CSV, codebooks.
• Cadence: Continuous (2-year cycles).
• License: Public domain.
• Pediatric relevance: Pediatric anthropometry, lab norms, dietary intake; basis of CDC growth refs and BP percentiles. Critical for synthetic patient generation.
• Priority: MUST-HAVE for synthetic data + reference ranges.

2.10 NSCH (National Survey of Children's Health)

• Description: Annual HRSA-funded, Census-administered survey of ~50K households on child health, well-being, special health-care needs.
• URL: https://www.childhealthdata.org/ ; raw: https://www.census.gov/programs-surveys/nsch.html — unverified this session
• Access: Public-use SAS/Stata/CSV; restricted-use data via Census FSRDC.
• Cost: Free.
• Cadence: Annual.
• License: Public domain (public-use file).
• Pediatric relevance: Population priors for screening prevalences (ADHD, asthma, mental health, ACEs).
• Priority: NICE-TO-HAVE.

2.11 NSFG (National Survey of Family Growth)

https://www.cdc.gov/nchs/nsfg/ — adolescent reproductive-health priors. WAIT.

2.12 YRBSS (Youth Risk Behavior Surveillance System)

• URL: https://www.cdc.gov/healthyyouth/data/yrbs/ — unverified this session
• Access: CSV/SAS bulk + interactive analytic tool.
• Cost: Free.
• Cadence: Biennial.
• License: Public domain.
• Pediatric relevance: Adolescent health-risk prevalences; drives CDS thresholds for screening (substance use, sexual activity, suicidality).
• Priority: NICE-TO-HAVE.

2.13 MMWR (Morbidity and Mortality Weekly Report)

• URL: https://www.cdc.gov/mmwr/ — unverified this session
• Access: HTML, PDF, RSS.
• Cost: Free.
• Format: HTML/PDF; machine-readable JSON via CDC Data API for some series.
• License: Public domain.
• Pediatric relevance: Outbreak alerts, vaccine policy updates, screening guidance.
• Priority: NICE-TO-HAVE (RSS subscribe for alerts).

2.14 CDC Open Data Portal (data.cdc.gov)

• URL: https://data.cdc.gov/ — unverified this session
• Access: Socrata SODA API (JSON/CSV/XML), per-dataset endpoints.
• Cost: Free.
• Format: JSON, CSV, XML, GeoJSON.
• License: Public domain.
• Pediatric relevance: ~3,000 datasets including weekly flu/RSV/COVID by age, lead testing, BRFSS, environmental.
• Priority: NICE-TO-HAVE.

2.15 NNDSS (National Notifiable Diseases Surveillance System)

• URL: https://www.cdc.gov/nndss/ — unverified this session
• Access: Weekly tables via CDC Data Portal.
• Cost: Free.
• Pediatric relevance: Local incidence of pertussis, measles, varicella for clinical-suspicion priors.
• Priority: NICE-TO-HAVE.

2.16 CDC Lead Surveillance / CLPPP

https://www.cdc.gov/nceh/lead/data/ — state-level BLL prevalence for risk-based screening. NICE-TO-HAVE.

2.17 EPT (Early Periodic Screening) References & Bright Futures-aligned tools

• See HRSA section. CDC hosts the "Learn the Signs. Act Early." developmental milestone checklists (Free, public domain) at https://www.cdc.gov/ncbddd/actearly/ — unverified this session. MUST-HAVE for parent app developmental tracker.

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3. FDA Properties

3.1 OpenFDA

• Description: Unified API surface across drug labels, drug events (FAERS), drug enforcement, device events (MAUDE), device 510(k)/PMA, food enforcement, NSDE, animal events.
• URL: https://open.fda.gov/ ; API: https://api.fda.gov/ — unverified this session
• Access: REST API (JSON), bulk downloads (JSON ZIPs).
• Cost: Free; 240 req/min and 120K/day without API key, higher with free key.
• Format: JSON.
• Cadence: Quarterly to weekly depending on endpoint.
• License: Public domain.
• Pediatric relevance: Drug labeling extraction (pediatric_use field), pediatric AE signals via FAERS.
• Priority: MUST-HAVE.

3.2 Drugs@FDA

• URL: https://www.accessdata.fda.gov/scripts/cder/daf/ — unverified this session
• Access: Web search; bulk downloads at FDA download pages.
• Cost: Free.
• Format: Excel, JSON via OpenFDA.
• Pediatric relevance: Approval letters, labels; pediatric study requirements (PREA/BPCA).
• Priority: NICE-TO-HAVE (covered by OpenFDA + DailyMed in practice).

3.3 FDA Pediatric Labeling Information / Pediatric Studies Database

• URL: https://www.fda.gov/science-research/pediatrics/pediatric-labeling-information-database — unverified this session
• Access: Web; downloadable lists.
• Cost: Free.
• License: Public domain.
• Pediatric relevance: Authoritative list of drugs with pediatric-specific labeling changes from PREA/BPCA studies.
• Priority: MUST-HAVE (citation backbone for "is this drug pediatric-labeled?").

3.4 FAERS (FDA Adverse Event Reporting System)

• URL: https://www.fda.gov/drugs/questions-and-answers-fdas-adverse-event-reporting-system-faers — unverified this session
• Access: Quarterly ASCII/XML downloads; OpenFDA /drug/event API.
• Cost: Free.
• Format: XML, ASCII, JSON.
• Cadence: Quarterly.
• License: Public domain.
• Pediatric relevance: Pediatric subset extraction by patient age.
• Priority: NICE-TO-HAVE.

3.5 FDA NDC Directory

• URL: https://www.accessdata.fda.gov/scripts/cder/ndc/ — unverified this session
• Access: ZIP download (Excel/Text), OpenFDA /drug/ndc.
• Cost: Free.
• Cadence: Daily.
• License: Public domain.
• Pediatric relevance: NDC↔RxNorm crosswalk for e-Rx and pharmacy interfaces.
• Priority: MUST-HAVE.

3.6 FDA Orange Book / Purple Book

Monthly ZIP at fda.gov; therapeutic equivalence + biosimilars. Free, public domain. NICE-TO-HAVE.

3.7 FDA Drug Shortages

• URL: https://www.accessdata.fda.gov/scripts/drugshortages/ — unverified this session
• Access: Web + RSS + downloadable XLS; ASHP also publishes a partner feed.
• Cost: Free.
• Pediatric relevance: Critical for pediatric formulations (oral suspensions, low-dose) which shortage frequently.
• Priority: NICE-TO-HAVE.

3.8 FDA MedWatch & Safety Communications

https://www.fda.gov/safety/medwatch — web + RSS, public domain. NICE-TO-HAVE (alerts).

3.9 GUDID / AccessGUDID

https://accessgudid.nlm.nih.gov/ — bulk + REST API; device UDI lookups. WAIT.

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4. HRSA / MCHB

4.1 NSCH (HRSA-funded; see CDC §2.10)

HRSA MCHB funds, Census fields. Primary access via https://www.childhealthdata.org/ — unverified this session. MUST-HAVE for population priors.

4.2 Title V MCH Block Grant Information System (TVIS)

https://mchb.tvisdata.hrsa.gov/ — state MCH performance measures (Excel). WAIT.

4.3 HRSA Data Warehouse

https://data.hrsa.gov/ — Socrata-style APIs; HPSA/MUA/MUP for telehealth planning. NICE-TO-HAVE.

4.4 Bright Futures (AAP / HRSA co-publication)

• Description: The recommended pediatric preventive-services schedule and visit content ("Periodicity Schedule" + visit forms).
• URL: https://brightfutures.aap.org/ ; HRSA: https://mchb.hrsa.gov/programs-impact/programs/bright-futures — unverified this session
• Access: PDF (free) for the Periodicity Schedule and visit summaries; the full Bright Futures Guidelines, 4th Edition book is paid (AAP). Pocket Guide and forms are free.
• Cost: Free for periodicity schedule, visit handouts, pre-visit questionnaires; paid for the complete guidelines.
• Format: PDF, some Word.
• License: AAP-copyrighted; HRSA-funded items often permit reproduction with attribution — must verify per-asset license.
• Pediatric relevance: Core — the canonical well-child visit framework for US pediatrics.
• Priority: MUST-HAVE (free portions); flag the paid book in /commercial.md.

4.5 Healthy People 2030

https://health.gov/healthypeople — objectives JSON API, public domain. National benchmarks for screening/immunization coverage. NICE-TO-HAVE.

4.6 Newborn Screening (NewSTEPs / APHL + HRSA RUSP)

• Description: Recommended Uniform Screening Panel (RUSP) is HRSA-blessed; NewSTEPs (APHL) tracks state implementations.
• URL: https://www.hrsa.gov/advisory-committees/heritable-disorders/rusp ; https://www.newsteps.org/ — unverified this session
• Access: PDF / web; some bulk via NewSTEPs login.
• Cost: Free.
• Pediatric relevance: Per-state newborn screen panels and follow-up workflows.
• Priority: MUST-HAVE for newborn-visit workflow.

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5. AHRQ

5.1 HCUP (Healthcare Cost and Utilization Project)

• Description: Largest US all-payer encounter datasets. HCUP-KID = Kids' Inpatient Database (triennial, ~3M peds discharges); NIS has pediatric subset; NEDS = ED.
• URL: https://www.hcup-us.ahrq.gov/ — unverified this session
• Access: Purchased via HCUP Central Distributor; DUA required; nominal cost (often a few hundred USD per file for non-students; free for some federal users).
• Cost: Low-cost paid + DUA. Flag as "not free".
• Format: ASCII, SAS, Stata.
• Cadence: Annual / triennial.
• License: AHRQ DUA — restricted re-use; no individual identification, no commercial redistribution.
• Pediatric relevance: Pediatric inpatient/ED epidemiology; benchmark for "is this admission rate normal?"
• Priority: WAIT (until research/analytics phase).

5.2 MEPS (Medical Expenditure Panel Survey)

• URL: https://meps.ahrq.gov/ — unverified this session
• Access: Public-use SAS/Stata/ASCII.
• Cost: Free (public-use).
• Pediatric relevance: Family medical expenditure modeling; useful for DPC pricing analytics.
• Priority: NICE-TO-HAVE.

5.3 USPSTF Recommendations (AHRQ-supported)

• URL: https://www.uspreventiveservicestaskforce.org/ — unverified this session
• Access: Web, PDF; JSON/REST API for recommendations exists.
• Cost: Free.
• License: Public domain.
• Pediatric relevance: Pediatric screening recommendations (vision, depression in adolescents, lipid, etc.). Plus letter grades drive ACA preventive-services coverage.
• Priority: MUST-HAVE.

5.4 CDS Connect (AHRQ)

• URL: https://cds.ahrq.gov/cdsconnect — unverified this session
• Access: Web; CQL/FHIR artifacts free to download.
• Cost: Free.
• License: Per-artifact, mostly Apache 2.0 / CC.
• Pediatric relevance: Pre-built CDS artifacts incl. pediatric BMI, adolescent depression screening, opioid.
• Priority: MUST-HAVE for CDS scaffolding.

5.5 AHRQ PSNet, TeamSTEPPS, SOPS

https://psnet.ahrq.gov/ — patient-safety guidance. WAIT.

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6. CMS

6.1 CMS Public Use Files / data.cms.gov

https://data.cms.gov/ — Socrata API, bulk CSV, public domain. Skews adult; useful for Medicaid peds provider directories. WAIT.

6.2 Medicaid & CHIP (T-MSIS DataHub)

• URL: https://www.medicaid.gov/dq-atlas/ ; https://data.medicaid.gov/ — unverified this session
• Access: Web reports; researcher access to T-MSIS Analytic Files via DUA.
• Cost: Free public; researcher tier requires DUA.
• Pediatric relevance: Medicaid/CHIP cover ~40% of US kids; utilization & quality measures (CMS Child Core Set) are key.
• Priority: NICE-TO-HAVE.

6.3 CMS Child Core Set (Quality Measures)

• URL: https://www.medicaid.gov/medicaid/quality-of-care/performance-measurement/adult-and-child-health-care-quality-measures/ — unverified this session
• Access: PDF, value sets in VSAC.
• License: Public domain (CMS-authored portions).
• Pediatric relevance: Pediatric quality measures we may need to report (well-child visits, immunization status, BMI, lead screening, ADHD follow-up).
• Priority: MUST-HAVE for value-based contracting.

6.4 CMS NPPES (NPI Registry)

• URL: https://npiregistry.cms.hhs.gov/ — unverified this session
• Access: REST API, bulk monthly download.
• Cost: Free.
• License: Public domain.
• Pediatric relevance: Provider directory backbone.
• Priority: MUST-HAVE.

6.5 HCPCS Level II

• URL: https://www.cms.gov/medicare/coding-billing/healthcare-common-procedure-system — unverified this session
• Access: Quarterly Excel/Text downloads.
• Cost: Free.
• License: Public domain (Level II); CPT (Level I) is NOT free — AMA license required.
• Priority: MUST-HAVE (vaccines, supplies billing).

6.6 CMS Promoting Interoperability / ONC USCDI

• URL: https://www.healthit.gov/isa/united-states-core-data-interoperability-uscdi — unverified this session
• Access: Web, downloadable spec.
• License: Public domain.
• Pediatric relevance: USCDI v3+ defines required EHR data classes — we comply with this for ONC certification.
• Priority: MUST-HAVE (compliance).

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7. State / Local Public Health

7.1 State Immunization Information Systems (IIS)

See §2.7. Per-state. MUST-HAVE state-by-state.

7.2 State Newborn Screening Programs

See §4.6. MUST-HAVE for newborn workflows.

7.3 State Electronic Lab Reporting (ELR) & Syndromic Surveillance

• URL (CDC orchestrator): https://www.cdc.gov/nssp/ — unverified this session
• Access: Per-state HL7 v2 ORU connection.
• Pediatric relevance: Required public-health reporting (reportable conditions: measles, pertussis, lead, etc.).
• Priority: MUST-HAVE for ONC certification (Public Health Reporting criteria).

7.4 PRAMS

https://www.cdc.gov/prams/ — pregnancy risk assessment; public-use free. WAIT.

7.5 State Open-Data Portals

Socrata/ArcGIS hubs (data.ca.gov, health.data.ny.gov, data.texas.gov, etc.). WAIT per launch state.

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8. Standardized Vocabularies & Code Sets

Vocabulary	URL	Cost	License	Cadence	Format	Priority
ICD-10-CM (diagnoses)	https://www.cms.gov/medicare/icd-10/2026-icd-10-cm	Free	Public domain	Annual (Oct 1)	XML, TXT, Excel	MUST-HAVE
ICD-10-PCS (inpatient procedures)	CMS	Free	Public domain	Annual	XML, TXT	WAIT (outpatient peds rarely uses)
SNOMED CT US Edition	https://www.nlm.nih.gov/healthit/snomedct/us_edition.html	Free for US use	NLM/SNOMED Intl. Affiliate License	Bi-monthly	RF2	MUST-HAVE
LOINC (labs, observations)	https://loinc.org/downloads/	Free	LOINC License (permissive, attribution)	Twice/year	CSV, OWL, FHIR	MUST-HAVE
RxNorm	https://www.nlm.nih.gov/research/umls/rxnorm/	Free	Unrestricted	Monthly	RRF, JSON	MUST-HAVE
NDC	OpenFDA / FDA	Free	Public domain	Daily	JSON, Excel	MUST-HAVE
CVX/MVX (vaccines)	CDC IIS Standards	Free	Public domain	Continuous	XML/HTML	MUST-HAVE
HCPCS Level II	CMS	Free	Public domain	Quarterly	Excel	MUST-HAVE
CPT (Level I procedures)	AMA	PAID	AMA copyright; per-user license fees	Annual	proprietary	MUST-HAVE but paid — budget for AMA license
HL7 FHIR R4 / R4B / R5	https://www.hl7.org/fhir/	Free	CC0 (FHIR core)	Periodic	StructureDefinitions JSON/XML	MUST-HAVE
US Core IG	https://hl7.org/fhir/us/core/	Free	CC0	Yearly	FHIR IG	MUST-HAVE
USCDI	https://www.healthit.gov/isa/uscdi	Free	Public domain	Annual	PDF/JSON	MUST-HAVE
C-CDA	https://www.hl7.org/implement/standards/product_brief.cfm?product_id=492	Free (HL7 membership not required for read)	HL7 license	Periodic	XML	NICE-TO-HAVE
UCUM (units)	https://ucum.org/	Free	Open-source license	Periodic	XML	MUST-HAVE
MeSH	NLM	Free	Public domain	Annual	XML/RDF	NICE-TO-HAVE
MedDRA (regulatory AE terminology)	https://www.meddra.org/	PAID for commercial	MSSO license tiered by revenue	Twice/year	ASCII	WAIT
ICF (functioning/disability)	WHO	Free	WHO license	Periodic	XML	WAIT

CPT licensing

CPT is NOT public domain. AMA charges per-user (or per-EHR-seat) license fees. Budget this into the rate card. Some workarounds: use the free CMS HCPCS Level II for vaccines/supplies; license CPT through a clearinghouse partner (Change Healthcare/Office Ally) where their distribution license can cover end-users.

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9. Pediatric-Specific Guideline Documents (Free / Near-Free Subset)

Guideline	Source	URL	Cost	Priority
CDC/AAP Childhood Immunization Schedule	CDC	cdc.gov/vaccines/hcp/imz-schedules	Free	MUST-HAVE
ACIP Vaccine Recommendations & Statements	CDC	cdc.gov/vaccines/acip	Free	MUST-HAVE
CDC Growth Charts (2-20)	CDC	cdc.gov/growthcharts	Free	MUST-HAVE
WHO Growth Standards (0-2)	WHO/CDC	who.int/tools/child-growth-standards	Free	MUST-HAVE
Bright Futures Periodicity Schedule	AAP/HRSA	brightfutures.aap.org	Free (schedule PDF)	MUST-HAVE
Bright Futures Pre-Visit Questionnaires	AAP/HRSA	brightfutures.aap.org/materials-and-tools	Free	MUST-HAVE
Bright Futures Guidelines, 4th Ed (full book)	AAP	shop.aap.org	PAID	flag in /commercial.md
AAP Red Book	AAP	redbook.solutions.aap.org	PAID	flag in /commercial.md
USPSTF Recommendations	AHRQ	uspreventiveservicestaskforce.org	Free (incl. API)	MUST-HAVE
CDC Lead Screening Recommendations	CDC	cdc.gov/nceh/lead	Free	MUST-HAVE
CDC Developmental Milestones (Learn the Signs)	CDC	cdc.gov/ncbddd/actearly	Free	MUST-HAVE
NHLBI Pediatric BP Tables	NIH/NHLBI	nhlbi.nih.gov	Free	MUST-HAVE
NHLBI Cholesterol Pediatric Guidelines (Expert Panel 2011)	NIH/NHLBI	nhlbi.nih.gov	Free	NICE-TO-HAVE
NHLBI Pediatric Asthma EPR-3 / 2020 Focused Updates	NIH/NHLBI	nhlbi.nih.gov/health-topics/asthma	Free	MUST-HAVE
NIDA Screening Tools (S2BI, BSTAD, CRAFFT)	NIH/NIDA	nida.nih.gov	Free	NICE-TO-HAVE
AAP-endorsed Bilirubin Guidelines (Hyperbilirubinemia 2022)	AAP	publications.aap.org	Free PDF (open access)	MUST-HAVE
AAP Obesity CPG (2023)	AAP	publications.aap.org	Free open access	MUST-HAVE
ADHD CPG (AAP 2019)	AAP	publications.aap.org	Free open access	MUST-HAVE

AAP open-access policy

AAP has been making select CPGs free open-access on publications.aap.org. Verify each at ingest time — license may be CC-BY-NC-ND restricting commercial redistribution but permitting clinical use.

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10. Other Federal Sources Worth Knowing

Source	URL	Pediatric relevance	Priority
NIH RePORTER	https://reporter.nih.gov/	Funded research lookup	WAIT
NIDDK Data Repository	https://repository.niddk.nih.gov/	Pediatric T1D, obesity cohorts	WAIT
NICHD DASH	https://dash.nichd.nih.gov/	Pediatric study data archive	WAIT
NIEHS / EJScreen	https://ejscreen.epa.gov/	Environmental risk by census tract (asthma, lead)	NICE-TO-HAVE
EPA AirNow API	https://docs.airnowapi.org/	Real-time AQI for asthma alerts	NICE-TO-HAVE
USDA FoodData Central	https://fdc.nal.usda.gov/	Nutrition lookup for parent app	NICE-TO-HAVE
SAMHSA Treatment Locator API	https://findtreatment.gov/	Adolescent SUD referrals	WAIT
NIH HEAL / Helping End Addiction Long-term	https://heal.nih.gov/	Adolescent OUD resources	WAIT
Census ACS / Decennial	https://www.census.gov/data/developers/data-sets.html	SDoH risk stratification	NICE-TO-HAVE
NCES School Data	https://nces.ed.gov/	School-located care planning	WAIT
Social Vulnerability Index (CDC/ATSDR)	https://www.atsdr.cdc.gov/placeandhealth/svi	SDoH overlay	NICE-TO-HAVE

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11. Implementation Notes for Starlight

Ingestion architecture

1. Tier 1 (launch blockers) — ICD-10-CM, RxNorm, NDC, LOINC, SNOMED CT US, CVX/MVX, HCPCS, CDC + WHO growth charts, ACIP schedule, USCDI/US Core, Bright Futures periodicity, USPSTF, CDS Connect artifacts, MedlinePlus Connect, DailyMed, NPPES.
2. Tier 2 (v1.x AI grounding) — PubMed/PMC OA, ClinicalTrials.gov, NHANES, NSCH, MMWR, AAP open-access CPGs, NHLBI BP tables, "Learn the Signs."
3. Tier 3 (analytics/research) — HCUP-KID (paid, DUA), MEPS, T-MSIS, YRBSS, SVI.
4. State-by-state rollout — IIS, ELR, syndromic surveillance, newborn screen follow-up — per launch jurisdiction.

Licensing minefields to track

• CPT — budget AMA license.
• MedDRA — only if we go regulatory/PV. Skip otherwise.
• SNOMED CT — free for US use only; international expansion requires SNOMED International affiliate license.
• StatPearls — CC-BY-NC-ND blocks commercial redistribution.
• A.D.A.M. content in MedlinePlus — not redistributable.
• HCUP — DUA prohibits re-identification & commercial redistribution; analytics output OK with caveats.
• Bright Futures — AAP-copyrighted; HRSA grant terms generally permit reproduction with attribution; verify each asset.
• AAP CPGs — per-paper open-access status varies; verify CC license at ingest.

Verification ToDo

Before crawl/ingest, re-confirm every URL flagged unverified this session and capture: response 200 + content-type, license/ToS snapshot, rate-limit / robots.txt posture.

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Last updated: 2026-05-07.