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Research Data Resources

National Surveys

Name

Description

National Health and Nutrition Examination Survey (NHANES)

Personal interview, physical exam, lab tests, nutritional assessment
5,000 persons, all ages. Oversample young, old, minorities

National Health Interview Survey (NHIS)

Personal interview. ~ 40,000 household. Oversample blacks and Hispanics

Mortality Follow-ups for the NHANES and NHIS

NHANES III (baseline 1988 – 1994) has been linked to death through 2000. 9000-15,000 adults followed 8-12 years to mortality

Nation Hospital Discharge Survey (NHDS)

Hospital records, Computerized data sources from 500 hospitals with 300,000 discharges

Community-based Cohorts

Atherosclerotic Risk in Communities Study (ARIC)

Prospective cohort; 16,000 mid-aged adults from 4 U.S. communities
Details on cardiovascular disease risk factors

Multi-Ethnic Study of Atherosclerosis (MESA)

Prospective cohort from 6 sites with diverse and representative sample of ~ 7,000 men and women
Studies progression to clinical CVD

Clinical Trials

Name

Description

DPP Outcome Study (DPPOS)

Cohort after RCT; all DPP participants
Evaluate long-term effects of active DPP interventions on the development of diabetes, and microangiopathic and CVD outcomes

Look AHEAD

Largest study of weight loss ever conducted; 5,000 participants with diabetes
Hopkins is home to multiple federally supported ancillary studies including a) fatty liver; b) heavy metal exposure; c) environmental influences on weight and weight loss

Practice-Based Opportunities for Weight Reduction (POWER) Trial

Real world effectiveness trial designed to establish approaches to translate findings from major NIH lifestyle trials into clinical practice

Administrative and Clinical Datasets

Name

Description

Johns Hopkins Inpatient Diabetes Database

Over 33,000 patient-level inpatient observations including glucometrics, insulin prescribing, and demographic data from 2006-2010 covering timeframe of hospital-wide glucose management initiatives

CMS 5% Sample Longitudinal Dataset

5% nationally random sample of Medicare beneficiaries; 2 million per year
Claim and enrollment; JHU has research identifiable version of data

SEER-Medicare

Linkage of US cancer registries data and Medicare data
Cancer characteristics, health care services data since 1986

Blue Shield and Blue Cross Claims from 7 regions

Claims and HRA data from Hawaii, PA, Michigan, NC, TN, IW, SD

United/Americhoice

Medicaid database including 7 million patients and link to labs

Maryland Statewide Hospital Discharge

~ 6 million patient records over the past 10 years
Inpatient discharges from all Maryland hospitals

Johns Hopkins Hospital and Bayview Discharge Abstracts

Over 600,000 patient records over the past 10 years
Internal data includes functional units within which the patient was treated, cost recovery data, and total charges

Johns Hopkins Community Physicians Health Plan

Electronic records for 100,000 individuals
Include personal and financial demographics, encounters, appointments, lab, medications, ICD-9, CPT, and HCPCS codes

Medical Expenditure Panel Survey (MEPS)

AHRQ national information resource for patient-level health care data
Data on specific health services and related cost and insurance information from 13,000+ family and 32,000+ individuals