The National Longitudinal Study of Adolescent Health (Add Health) is a longitudinal study of a nationally representative sample of adolescents in grades 7-12 in the United States during the 1994-1995 school year. 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,...

The United States Renal Data System (USRDS) is a national data system that collects, analyzes, and distributes information about end-stage renal disease (ESRD) in the United States. The USRDS is funded directly by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). USRDS staff collaborate with members of Centers for Medicare & Medicaid Services (CMS), the United Network for...

The Type 1 Diabetes (T1D) Exchange Clinic Registry collects information on individuals with type 1 diabetes from participating institutions in the United States in order to help researchers characterize individuals living with the disease, conduct exploratory or hypothesis-generating analyses, and identify potential participants for future clinical studies. The registry includes over 26,000 individuals...

The Osteoarthritis Initiative (OAI) was a longitudinal cohort study which investigated the natural history of knee osteoarthritis across the spectrum of the disease through the collection of imaging, biochemical, genetic, and risk markers of knee OA. Measures included knee symptoms and function (evaluated using the West Ontario and McMaster Universities Arthritis Index (WOMAC) and the Knee injury and...

The NYU Alzheimer’s Disease Research Center (NYU ADRC) maintains a large database of standardized clinical and neuropathological research data collected at NYU Langone Health for local investigators, as well as those at affiliated or collaborating institutions. The NYU ADRC database includes a cumulative record of over 1,500 subjects enrolled since 1972. Data was collected every two years until 2005...

The Prostate, Lung, Colorectal, and Ovarian (PLCO) Cancer Screening Trial was a large randomized controlled trial that assessed whether certain screening practices decreased deaths from prostate, lung, colorectal and ovarian cancer. Approximately 155,000 men and women aged 55 to 74 years old were enrolled from 10 screening centers across the United States between November 1993 and July 2001. Participants...

The Human Epilepsy Project (HEP) is a multi-institutional series of prospective, observational studies to identify factors that predict disease outcome, progression, and treatment response among participants with epilepsy. HEP, conducted between 2012 and 2020, included 488 participants aged 12 to 60 years old with new onset focal epilepsy recruited in Australia, Canada, and the United States. Participants...

The Novel Coronavirus Illness Patient Report (NCIPR) dataset includes survey responses from 2,212 confirmed COVID-19 patients aged 18 to 98 who were treated at NYU Langone Health facilities between February 2020 and March 2021 and consented to the survey. Survey invitations were distributed two waves: once in February 2021 and once in March 2021. Between waves, 9 new items were added to the survey...

The Alzheimer’s Disease Neuroimaging Initiative (ADNI) began in 2004 as longitudinal multicenter study to identify clinical, imaging, genetic, and biochemical biomarkers for the detection and tracking of Alzheimer’s disease (AD). Participants are recruited from and followed at 59 research sites in the United States and Canada. ADNI1 enrolled 400 subjects who were diagnosed with mild cognitive impairment...

The National Alzheimer’s Coordinating Center (NACC) was created in 1999 to facilitate research with data collected from Alzheimer's Disease Research Centers (ADRCs) across the United States. NACC oversees data collection and sharing for a number of datasets. The Uniform Data Set (UDS) contains longitudinal and standardized data collected from ADRCs since 2005. ADRC enrollment protocols vary and...