Palliative Care: Statistics, Data, and Survey Instruments

Including information about tools for data management planning, data and file sharing, metadata and data standards, and data storage.

Create ready-to-use data management plans for specific funding agencies. Use your gatorlink and password to login.

Includes NIH-supported domain-specific repositories (open and limited access) and generalist repositories

A list of research data repositories, searchable by subject area.

Includes ACIC (Assessment of Chronic Illness Care), PCMH-A (Patient-Centered Medical Home Assessment), and PACIC (Patient Assessment of Chronic Illness Care).

Health and Psychosocial Instruments (HaPI) is a database that provides access to information on approximately 15,000 measurement instruments. If accessing from off-campus, you will need to be logged in via the library proxy or VPN.

Consumer Assessment of Healthcare Providers and Systems (CAHPS) surveys ask consumers and patients to report on and evaluate their experiences with health care.

Q-Bank provides researchers and survey practitioners access to survey questions from federal agencies and question evaluation reports. Agencies include the National Center for Health Statistics, US Census Bureau, Bureau of Labor Statistics, National Cancer Institute, and National Science Foundation.

Includes interactive charts and tools, state data, etc.

Includes Healthcare Cost and Utilization Project (HCUP), Medical Expenditure Panel Survey (MEPS), State Snapshots, US Health Information Knowledgebase (USHIK). Permissions needed to access some data.

A registry and results database of clinical studies of human participants; from the National Institutes of Health.

Data archive of the Robert Wood Johnson Foundation; some permissions needed to download data.

Global catalog of surveys, censuses, vital statistics, and other health-related data. From the Institute for Health Metrics and Evaluation at the University of Washington.

OMIM is a comprehensive, authoritative compendium of human genes and genetic phenotypes that is freely available and updated daily. From Johns Hopkins School of Medicine.

A curated general-purpose repository that makes the data underlying scientific publications discoverable, freely reusable, and citable.