Cerebral Palsy Research Network Blog

Archive for REDCap Registry

HIPAA

A waiver of consent is requested because the data forms a Limited Data Set defined by the Health Information Portability and Accountability Act (HIPAA) as protected health information in which direct identifiers have been removed but potential identifiers (such as date of birth, hospitalization dates, and relevant medical information) remain. The following direct identifiers will NOT be collected for this study:

  • Name
  • Street address/postal address information
  • Telephone and fax numbers
  • Electronic mail addresses
  • Social security numbers
  • Medical record numbers or other account numbers
  • Certificate/license numbers
  • Vehicle identifiers or serial numbers including license plate numbers
  • Device identifiers and serial numbers
  • Web universal resource locators (URLs) or Internet protocol address numbers
  • Biometric identifiers such as finger and voice prints
  • Full face photographic images or any comparable image

The Data Coordinating Center will offer a Business Associate Agreement (BAA) to each Clinical Center to authorize its creation of a completely de-identified database for use by CPRN investigators.