Sensitive Research Data Management

HIPAA Privacy homepage managed by Purdue University Student Health (PUSH)

Maintained by the Export Control and Information Assurance team within the Office of Research and Partnerships.

Guidance from The Interuniversity Consortium for Political and Social Research (ICPSR), which is a repository of social science data, on data management best practices to prepare data for eventual sharing and archiving.

• Chapter 5. Final Project Phase: Preparing Data for Sharing addresses confidentiality issues specifically.
  
• Chapter 3. Data Collection and File Creation Phase addresses issues of coding schemes and other best practices for data handling.

Other useful documents from ICPSR:

• Confidentiality Language for Informed Consent Agreements
• Confidentiality and Privacy

The Ethics and Consent section (pgs. 22-27) of this guide contains information about sharing sensitive and confidential research data.

GDPR aims to strengthen protections for individuals of the European Union and will be enforceable May 25, 2018.

This guide details the variety of data storage options available to faculty and students at Purdue University..

REDCap is a self-managed, secure, web-based platform that is designed to support data collection and data management for research, operations support and quality improvement projects. This easy-to-use, intuitive tool provides functionality and features to enable individuals to rapidly develop databases and surveys for collecting and managing data.

See REED Folders for additional information.

GDPR aims to strengthen protections for individuals of the European Union and will be enforceable May 25, 2018.

Maintained by the Export Control and Information Assurance team within the Office of Research and Partnerships.

Information about the Federal Policy for the Protection of Human Subjects a.k.a the "Common Rule" and links to information produced by federal agencies.

The Office for Civil Rights enforces:

• the HIPAA Privacy Rule, which protects the privacy of individually identifiable health information
  
• the HIPAA Security Rule, which sets national standards for the security of electronic protected health information
  
• the confidentiality provisions of the Patient Safety Rule, which protect identifiable information being used to analyze patient safety events and improve patient safety

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) rules create a framework to protect the privacy and security of patient and health plan member health information. Purdue University supports the goals of HIPAA and documents its commitment to comply with these laws in its Compliance with HIPAA Privacy Regulations policy.

Data Management Plan Requirements for NEH Office of Digital Humanities Grants (updated yearly)

The final NIH data management and sharing policy beginning in January 2023. Supplemental information about specific topics is included

Links to resources about the NSF's policy on data sharing, data management plan requirements, and FAQs.

The Purdue University Institutional Review Board (IRB) is responsible for overseeing the rights and welfare of human subjects. The terms and conditions under which sensitive are released with need to be reviewed and approved by the IRB as a part of the research protocol review process.

The goal of Secure Purdue is to further Purdue’s mission by protecting the confidentiality, integrity and availability of University information and technology assets. See Data Handling tab for updated information.