AGNIS, or A Growable Network Information System, began as an idea to transmit hematopoietic stem cell transplant data between organizations but developed into a standards based communications model. Originally intended to be built upon an existing messaging system, analysis of the National Institutes of Health (NIH) cancer Boimedical Informatics Grid (caBIG™) project made a strong case for using their tools. caBIG is becoming a recognized leader in creating standards for grid computing and data definition. Their mission to connect the cancer community to accelerate research discoveries and improve patient outcomes fits the purpose of AGNIS, which is the implementation of clinical data exchange across the HSCT community to decrease the time it takes for patient follow-up data to be available for research.
AGNIS works by acting as a translator between two centers. Typically, every organization has its own proprietary database or uses third party software to maintain their data. When organizations attempt to communicate their data to one another, they must first massage the data into a format that the other organization can recognize. AGNIS takes care of this by performing this translation. For example, organization A speaks German while organization B speaks French. They wish to exchange data but their data is incompatible without first translating from French to German or German to French. Enter AGNIS which always communicates in English. Organizations A and B map their data to the standard English format which then allows them to communicate using AGNIS. The power of this is apparent when organization C wants to share data with A and B. As long as C has mapped their data to the data standard they will be able to communicate with A and B immediately.
What is referred to as “English” above are actually standardized common data elements (CDEs) curated and stored on the NIH’s publicly accessible cancer Data Standards Registry and Repository (caDSR). National Marrow Donor Program (NMDP) and Center for International Blood and Marrow Transplant Research (CIBMTR) have committed to the creation and maintenance of CDEs pertaining to hematopoietic stem cell transplantation. Along with NIH, NMDP and CIBMTR there are many other organizations who also actively contribute to this International Organization for Standarization (ISO) compliant terminology dictionary. Due to the reusable nature of elements in caDSR, everyone benefits as more terms are created.
Figure 2 – showing how each AGNIS instance will use the CDEs in caDSR.
AGNIS has been developed using and building upon open source tools available from caBIG and other well supported projects. The caBIG project provides core functionality for what is called “grid computing”, meaning that organizations connected together on a grid or network can search and access other data on the same grid. Related projects provide security, encryption, data storage and code building toolsets. Participation with these projects grants access to communities that provide standards and development support that would otherwise not be available to us.
AGNIS is not currently "grid enabled", meaning that it is not connected to a larger searchable infrastructure. This current version of AGNIS contains code that makes it possible to submit CIBMTR patient outcomes forms electronically. The forms data is then fed into the FormsNet™ 3 web-based data entry system which provides data validation before forwarding the data on to the Stem Cell Therapeutic Outcomes Database (SCTOD). This version also support retrieval of completed FormsNet™ 3 forms from the AGNIS repository.