Designing and Building the RegistryNXT!® Platform for a Rare Disease 

Client Situation

Genzyme sponsors and operates four rare disease registries, including a global 20-year study of patients with Gaucher disease, the largest data set ever collected on this disease. Genzyme’s registries are industry models in both design and execution of long-term observational studies. They play a critical role in advancing the global understanding of disease, analyzing treatment outcomes over time, and fulfilling regulatory requirements related to life-threatening genetic diseases. Genzyme needed to replace an aging data collection system for the registries. At the same time, the company also needed to address a complex set of challenges:

  • Ensure accurate migration of all legacy data
  • Improve the registry value and reporting capabilities for participating physicians and nurses 
  • Adopt the use of CDISC standards to allow advanced electronic interchange of clinical data 

The Digital Infuzion Solution

Serving as the primary partner for Genzyme, Digital Infuzion took a leadership role in the end-to-end design and construction of the RegistryNXT! platform, which is an innovative SaaS solution that includes:

  • Fully integrated single sign portal to data collection and analytical graphs and reports 
  • Medidata’s RAVE, the leading clinical trial data collection application
  • Real-time data interchange using CDISC standards 
  • Role-based disease management for patients, physicians, and nurses
  • Reporting functionalities for sites, registry staff, and Genzyme regulatory reports
  • The only live production system based on the CDISC BRIDG model for health care and clinical trial data 


The platform of registries gives physicians the ability to share and retrieve data in a quick, secure, and seamless manner. These capabilities result in better decisions for patient treatment and better quality long-term research data.

RegistryNXT!® is a registered trademark of Genzyme Corporation.

RegistryNXT! helps disease registry participants track longitudinal outcomes. 

Related Clients

Related Services