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.
How Can We Make the Complex Feel Simple?
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.
Elegant Solutions
As you can imagine, simplicity requires behind-the-scenes complexity. Our solution set recommendations encompassed the following:
- The FILL system would need to integrate USDINET.org’s foundation website. We recommended extending the USIDNET.org WordPress website with a custom private application developed in conjunction with custom plugin development.
- Patient data could only be stored in the USIDNET Registry, an existing and highly complex 3-dimensional data warehouse, to provide conformance to HIPAA patient record protection standards.
- De-identified patient, demographic, and evaluation form (initial, mid-year, and annual) data was made available via a physician dashboard.
- WordPress extensions such as Gravity Forms, form pre-population tools, as well as data monitoring and submittal process tools were developed and customized to streamline data entry and UX experiences.
Top 3 Special Challenges
What We Enjoyed About This Project
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