Creating a Registry for Lysosomal Acid Lipase (LAL) Deficiency

The Lysosomal Acid Lipase (LAL) Deficiency Registry is a research and disease management observational study that gathers patient data—including health history and treatments. Its purpose is to inform questions of interest from the LAL Deficiency healthcare provider community.

Creating the registry requires a high-quality service platform that is scalable upon product approval. It must also provide an excellent research experience for the healthcare providers who care for LAL Deficiency patients.

Digital Infuzion thrives on this type of challenge, which is why Synageva BioPharma Corp. chose Digital Infuzion’s Observational Research Platform as a technology service solution. This platform provides tools for healthcare providers to collect, monitor, and report on data and medical knowledge about the progression of LAL Deficiency and its outcomes.

Digital Infuzion customized and configured its platform, using the data collection application and an integrated web site portal as the foundation of the registry.

The LAL Deficiency Registry is designed to: 

  • Support regulatory filings
  • Capture a broader data set on untreated patients, which will mean a faster evaluation of treatment outcomes when treated patients are included
  • Create a longitudinal data set for evaluating all patients (treated and untreated) over the long term
  • Provide relevant data for scientific publications to improve evidence-based clinical practice
  • Create a central mechanism to continuously develop a scientific community in support of LAL Deficiency


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Synageva LAL Registry

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