The United States Immunodeficiency Network (USIDNET) is an NIH-funded program of the Immune Deficiency Foundation (IDF) which was established to advance scientific research in primary immune deficiency diseases (PI). Third Mind has been proud to work with USIDNET and IDF over a number of years to help them establish information technologies to support their efforts.
USIDNET created a registry partnership aimed at assembling and maintaining validated – yet de-identified – data from patients with PI. This partner program was intended to provide a comprehensive picture of each disorder while acting as a resource for clinical and laboratory research.
While considering access and structural edits to this highly complex three-dimensional registry data warehouse, a new challenge arose: Could we add a simplified bi-directional process for capturing data of newborn patients who may be diagnosed with primary immune diseases to the existing processes? The nascent seed of the FILL Program was born: Following Infants with Low-Lymphocytes Program.
We all know that ‘big data’ is the right analytical and computational model for demanding trend analysis. The larger emergent is ‘How do users, researchers, and clinicians collect and interact with the data in a simplified manner?”. Not only was Third Mind willing to find out, we were willing the build a system worthy of soothing the argument.
As you can imagine, simplicity requires behind-the-scenes complexity. Our solution set recommendations encompassed the following:
1) Working with the complexity of the multi-dimensional forms and resulting data integrations.
2) Mapping and implementing the new data requirements to the existing data warehouse.
3) Considering the implications of database changes and preventing unwanted changes to the existing Registry Interface and reporting tools.
A project that was referred to as 'impossible' by previous consultant agencies was brought to fruition by Third Mind. A solution that will lead to lives saved and better quality of life outcomes for the PI community.
The technical solution's flexible promise of revising the forms / data in the future. Very few edits have been required of the program since implementation.
Working with a collaborative and well-informed client, stakeholder, and steering committee team.