Hematology & Oncology: 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.

Select "Assessment" Resource Type for surveys ACIC (Assessment of Chronic Illness Care), PCMH-A (Patient-Centered Medical Home Assessment), and PACIC (Patient Assessment of Chronic Illness Care).

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.

This service of the National Cancer Institute offers comprehensive statistics on the incidence, prevalence, and survival rates of cancer patients throughout the United States. Raw data is and analysis software is available on request.

From the Center for Disease Control, these reports combine data from SEER and the CDC's Program of Cancer Registries.

From the National Cancer Institute, Division of Cancer Control and Population Sciences

This site includes presentations and summary data from the American Cancer Society.

This service of the National Cancer Institute offers information summaries, a clinical trials registry, and cancer genetics services directory for physicians.

This site contains worldwide cancer statistics as reported by the World Health Organization's International Agency for Research on Cancer. This includes data and estimates on incidence, survival, and mortality.

CIViC is an open access, open source, community-driven web resource for Clinical Interpretation of Variants in Cancer. Their goal is to enable precision medicine by providing an educational forum for dissemination of knowledge and active discussion of the clinical significance of cancer genome alterations.

Aims to create an organized and continuously updated databank collecting the huge and ever growing amount of scientific knowledge on melanoma .

Data and stats by health topic; includes interactive charts and tools, state data, etc.

From the Agency for Healthcare Research and Quality (AHRQ). 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.

From the CDC. Includes National Health & Nutrition Examination Survey, National Health Care Surveys, National Vital Statistics System, etc.

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.

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

NIH encourages the use of common data elements (CDEs) in clinical research, patient registries, and other human subject research in order to improve data quality and opportunities for comparison and combination of data from multiple studies and with electronic health records.