C-Path and Pulse Infoframe establish patient-centered data harmonisation partnership for rare disease research

[PRESS RELEASE] The Critical Path Institute (C-Path), an independent nonprofit organisation, and Pulse Infoframe, a real-world evidence generation, health informatics and insights company, have announced their collaboration to advance technologies and tools to further rare disease research and drug development.

Both organisations will support the creation of more streamlined and transparent informed consent processes and best practices for the development of global unique identifiers, data standards and data dictionaries.

An individual rare disease can often not produce enough data for researchers to develop treatments. Through this collaboration, Pulse Infoframe and C-Path can accelerate the development of treatments for rare diseases by sharing their data and advancing new models, tools and data standards based on that data. The two organisations will identify opportunities to combine Pulse Infoframe’s ambispective data with retrospective data in C-Path’s Rare Disease Cures Accelerator-Data and Analytics Platform (RDCA-DAP®), an FDA-funded initiative to support rare disease drug development.

The partnership between C-Path and Pulse Infoframe, and its combined data pool, will benefit the rare disease ecosystem, including patients, advocacy, researchers and pharma/biotech by supporting the development of the following:

  • Open data science strategies that support disease progression models and drug development tools informed by this combined data;
  • More sophisticated AI/ML-based approaches and methodologies to advance the knowledge in rare disease biology understanding based on analyses of these combined data;
  • data standards (GUID, CDM, data dictionaries) and their adoption by the industry; and more streamlined and transparent informed consent processes.