Reporting. Collaborating. Advancing.

Helping to improve the quality of care for patients with rare diseases such as Gaucher, Fabry, MPS I and Pompe with over 650 investigators and 13,500 patients and counting!

RegistryNXT! is a novel, web-based data collection and reporting technology platform that underlies the Genzyme Rare Disease Registries. This platform enhances the Registry experience for health care providers, patients, and researchers by providing a single point of entry through a front-end portal, immediate access to patient data, and flexible, easy-to-use reporting tools.

Researching Lysosomal Storage Disorders

A disease registry can help improve disease understanding by enabling physicians to:

  • Contribute and share data by entering participating patient data and having the ability to report on and share that data with other practitioners or their patient in near real time.
  • Gain insight by understanding the variations in disease for each patient and assessing their progress compared to other patients through aggregate reporting.
  • Improve research globally by contributing their data to aggregate analysis to understand progression of the disease and ultimately improve patient care.
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