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PhenX

The PhenX Toolkit was established in 2007 and provides investigators with access to well-established, low-burden, standardized measures to incorporate into new or existing biomedical studies involving human subjects.

https://www.phenxtoolkit.org/

PROMIS

The Common Fund’s Patient-Reported Outcomes Measurement Information System (PROMIS) addresses a need in the clinical research community for a rigorously tested patient reported outcome (PRO) measurement tool that uses recent advances in information technology, psychometrics, and qualitative, cognitive, and health survey research to measure PROs such as pain, fatigue, physical functioning, emotional distress, and social role participation that have a major impact on quality-of-life across a variety of chronic diseases.

https://commonfund.nih.gov/promis/index

NHANES

The National Health and Nutrition Examination Survey (NHANES) is a program of studies designed to assess the health and nutritional status of adults and children in the United States. The survey is unique in that it combines interviews and physical examinations. The survey examines a nationally representative sample of about 5,000 persons each year.

https://www.cdc.gov/nchs/nhanes/index.htm

All of Us

The All of Us Research Program, formed by the NIH, is inviting one million people across the U.S. to help build one of the most diverse health databases in history.

https://allofus.nih.gov/

NIH

NIH research resources that include existing registries, repositories, collections, and programs.

https://www.nih.gov/research-training/research-resources

Join Existing Consortiums

A research consortium is a formalized collaboration that connects individuals or organizations to address a common set of questions or goals using a defined structure and governance model.

Consortia often bring together multiple research projects (and sometimes multiple consortia), and operate under the guidance of management and data-access committees, advisory boards and other nominated groups.

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