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NIH Data Management and Sharing Policy

NIH Data Management and Sharing Policy

Guidance Regarding Methods for De-identification of Protected Health Information

Guidance Regarding Methods for De-identification of Protected Health Information in Accordance with the Health Insurance Portability and Accountability Act (HIPAA) Privacy Rule This webpage provides guidance about methods and approaches to achieve de-identification in accordance with the Health Insurance Portability and Accountability Act of 1996 (HIPAA) Privacy Rule. The guidance explains and answers questions regarding the two methods that can be used to satisfy the Privacy Rule's de-identification standard: Expert Determination and Safe Harbor. This guidance is intended to assist covered entities to understand what is de-identification, the general process by which de-identified information is created, and the options available for performing de-identification.

External Sites with non-NIA-funded Research Resources

Biologic Specimen and Data Repository Coordinating Center (BioLINCC) BioLINCC is the Biologic Specimen and Data Repository Coordinating Center for the National Heart, Lung, and Blood institute (NHLBI). The center coordinates data and biospecimens from NHLBI-funded studies that are available for use in other approved studies. BioLINCC also distributes teaching datasets from NHLBI-funded studies for use in biostatistics training programs.

Duke Human Heart Repository Sponsored and managed by Duke University School of Medicine and Duke Surgery, the Duke Human Heart Repository is an ongoing repository of heart tissues from failing and non-failing hearts for research. Grant writers and collaborators are invited to contact the repository director directly to use the DHHR as a tissue resource.

Heart Centre Biobank A biorepository and registry of patients with congenital and other forms of heart disease. The Heart Centre Biobank provides a resource for investigators to study the genetic and environmental causes of heart defects and other diseases through the study of DNA, tissue, and skin samples from affected patients.

NIDDK Central Repository A repository containing biospecimens and data sets from studies sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases of the National Institutes of Health. The site allows investigators to search for and request biospecimens and data sets which are housed in the repositories. NIDDK-funded studies may also find information on the processes for making submissions of biospecimens or data sets to the NIDDK through this site.

RD-Connect A global platform created to connect databases, registries, biobanks and clinical bioinformatics for rare disease research. It is funded by the European Union and is a central resource for researches focused on rare diseases.

Yale University Open Data Access Project (YODA) The YODA Project provides a means for rigorous and objective evaluation of clinical trial data to ensure that patients and physicians possess all necessary information about a drug or device when making treatment decisions. This process includes making participant-level clinical research data available for analysis by external investigators. This is a study data set resource ONLY.

NIH Data Sharing Catalog

The NIH Trans-NIH BioMedical Informatics Coordinating Committee (BMIC) has compiled and maintains an index of NIH-supported data repositories that make data available for reuse.


Accessing Scientific and Genomic Data