Research Data Compilations

Download this page in PDF | MS Word

Sometimes researchers or physician’s compile information that may prove to be useful for future research on a specific disease or disorder. If you are compiling a research data compilation that is used or will be used solely for the research purposes, it must be reviewed and approved by IRB before being populated with data.

Depending on the type of research you are conducting you may or may not have to obtain individual consent and authorization from each individual subject before entering their data into such a registry or specimen bank. IRB has developed the following documents to assist researchers in the development of protocols and consent documents for research registries and discarded specimen banks.

• Sample Research Registry Protocol is now available online
• Sample Research Registry Consent/Authorization is available online
• Sample Discarded Specimen Banking Consent/Authorization is available online

If you have an already existing research registry or discarded specimen bank, they must be reviewed and approved by IRB. IRB will determine on a case by case basis whether or not the registry or specimen bank requires the consent and authorization from each individual or if a waiver of consent and authorization can be justified.