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Warning Message New York is unable to fulfill requests at this time. The VRDBS is compliant with regulations mandated by H.R. 1281.

Glossary

Age at Collection

Age at collection is calculated by subtracting the date and time of collection from the date and time of birth. In the VRDBS searches should be constrained to hours or days.

Anonymized Specimens

Anonymized Specimens have no link retained that identifies an individual. The VRDBS does not contain any anonymized specimens. States have the ability to make specimens available that are anonymized for research purposes.

De-identified Specimens

All specimens in the VRDBS are de-identified and have an individual identifying link retained by the state. Privacy and confidentiality are maintained under the stewardship of the state public health program.

Diagnosed Condition

A specimen is considered a "diagnosed condition" when it has been determined by the state that the individual does have a condition for which the individual was screened positive. The individual has undergone diagnostic testing and is determined to have the disorder.

Feeding Status

At the time of collection of the specimen, some states collect information on the newborn's intake of food. When available, NBSTRN reports whether the newborn has ever had breast milk, lactose formula, lactose-free formula, or total parenteral nutrition (TPN - all feeding intravenously, bypassing the usual process of eating and digestion).

General Population

In the VRDBS, General Population refers to all DBS included in the virtual repository and includes both DBS from individuals with and without a diagnosed condition.

Identifiable Specimens

Identifiable specimens are those for which the identity of the individual to whom the specimen or the data pertain can be readily ascertained or readily associated with the information by the investigator. If the researcher obtains individually identifiable specimens about living individuals, the research involves human subjects and regulations governing such research apply.

HIPAA (Health Insurance Portability and Accountability Act of 1996) lists the following direct identifiers that must be removed in order to make data de-identified:

  1. Names
  2. Postal address information other than town or city, state and zip code
  3. All elements of dates (except year)
  4. Telephone numbers
  5. Fax numbers
  6. Electronic mail addresses
  7. Social security numbers
  8. Medical record numbers
  9. Health plan beneficiary numbers
  10. Account numbers
  11. Certificate/license numbers
  12. Vehicle identifiers and serial numbers, including license plate numbers
  13. Device identifiers and serial numbers
  14. Web Universal Resource Locators (URLs)
  15. Internet Protocol (IP) address numbers
  16. Biometric identifiers including finger and voice prints
  17. Full face photographic images and any comparable images
Research

Research is a systematic investigation, including research development, testing and evaluation, designed to develop or contribute to generalizable knowledge. Activities which meet this definition constitute research for purposes of this policy, whether or not they are conducted or supported under a program which is considered research for other purposes. For example, some demonstration and service programs may include research activities. (45 CFR 46.102(d)).

Residual Dried Blood Spot (DBS)

A Residual Dried Blood Spot is the specimen remaining after all of the requisitioned tests have been completed.

Virtual Repository (VRDBS)

The Virtual Repository is a centralized, web-based, database of information about stored residual DBS held by participating states.