Frequently Asked Questions
Capabilities
Listed below are the frequently asked questions about the capabilities of FITBIR.
- How does the research community provide input on the capabilities of FITBIR?
- What does data "federation" mean and why is it important to FITBIR?
- What is the GUID and why is it so important to FITBIR?
Q. How does the research community provide input on the capabilities of FITBIR?
NIH is keenly interested in collaborating with the TBI research community to help accelerate scientific discovery. FITBIR has solicited input from the community in a variety of meetings, webinars, and formal workshops. Additionally, FITBIR leads a number of special interest groups. Visit About Us to learn more about ongoing collaboration between FITBIR and the research community and feel free to contact us at to learn more about FITBIR and/or become involved.
Q. What does data "federation" mean and why is it important to FITBIR?
Data federation allows for the possibility to bring together data from different and often physically distributed systems that exist outside of a central system such as FITBIR into one single view. FITBIR will have the ability to use technology to access such data sources, allowing FITBIR to provide simple, efficient access to TBI research data that reside outside of FITBIR. Similarly, TBI research data exists in many databases located around the world, but differs in access processings for multiple sources and inconsistent data standards and formats often combine to create insurmountable barriers to data reuse and collaboration. Rather than moving data from their various sources into the FITBIR informatics system which can invoke additional complications FITBIR will deploy data "federation" technology to allow researchers to access important research data directly, in a simple, consistent manner. In doing so, researchers use a uniform interface to perform a single query to search and return data from multiple interconnected sources in a seamless fashion. Currently there are no federated sites associated with FITBIR.
Q. What is the GUID and why is it so important to FITBIR?
The FITBIR GUID, or "Global Unique Identifier", allows FITBIR to associate a single research participant's genetic, imaging, clinical assessment and other information even if the data were collected at different locations or through different studies. The GUID is created from personally identifiable information such as a subject's name and date of birth, however this information is never transmitted to or stored in the FITBIR database.
Important: Researchers who anticipate submitting research data to FITBIR should design their information collection procedures prior to subject enrollment to ensure the collection of all information needed to generate a GUID is available. The specific demographic information necessary to collect in order to create a GUID will be announced at a later date. By ensuring that this information is acquired and entered accurately at the research site, it is possible to identify subjects across research projects and allow a subject population without having to share protected personally identifiable information. In addition, researchers who are not expected to submit data to FITBIR are encouraged to collect this information from subjects in the event that research data may be submitted to FITBIR in the future. In the event that all subject information needed to generate a GUID is not available, a pseudo-GUID can be generated and assigned to a participant, however the ideal situation is to use valid GUIDs for all subjects to increase the linkage of research data both now and in the future.
