What are the NIH data sharing policies that require GUIDs?

Some NIH institutes require researchers to share research data with an NIH-maintained database. These policies require the use of Global Unique Identifiers (GUIDs) to link data for each participant among studies.

Before submitting an IRB application, researchers with NIH-funding should determine if the respective institute has adopted a data sharing policy requiring GUIDs.

What is a Global Unique Identifier (GUID)?

A GUID is a universal participant ID that allows researchers to share data specific to a study participant without exposing personally identifiable information (PII) and makes it possible to match participants across studies and research data repositories. NOTE: When you create a GUID, the software creates one-way hash codes that are sent to NDAR. No PII ever leaves your computer.

How do the NIH data sharing policies and GUIDs affect IRB review?

Researchers will be required to collect the following personally identifiable information (PII) from participants as it appears on their birth certificate:

  • Sex
  • First name
  • Last name
  • Middle name
  • Date of birth
  • City/municipality of birth

Researchers must obtain consent to share de-identified data in the NIH database. Studies involving children must obtain child assent and parental permission to shared de-identified data. Participants and parents may decline to give consent for sharing data and still participate in a study.

See the NIH data sharing addenda for consent and parental permission language:

Because the creation of GUIDs requires the collection of PII, IRB applications must indicate that identifiable information will be recorded and describe appropriate provisions to maintain the confidentiality of data. Sharing identifiable information within the NIH database is not permissible.

Researchers should contact the NYU IRB for GUID questions related to the IRB application and the appropriate informed consent language.