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Annual Rare Disease Workshop Showcases Data Sharing and Innovation in Drug Development

This week, Aridhia’s Kara Lasater (Project Manager) and Scott Russell (Chief Product Officer) will be attending the Annual Rare Disease Cures Accelerator – Data and Analytics Platform (RDCA-DAP) Workshop in Washington DC, hosted by Critical Path Institute (C-Path), the National Organization for Rare Disorders (NORD®), and the US Food and Drug Administration (FDA). This workshop will highlight the impact of their innovative data and analytics platform powered by the Aridhia DRE.

The workshop will be held in Washington DC from 13 to 14 September and will bring together diverse groups from the rare disease community including FDA, industry, academia, and patient representatives. This is the fourth annual meeting for RDCA-DAP, and the first time the event will be held in person since the program’s launch in 2019.

Workshop attendees can join a series of panels, discussions, and breakout sessions designed to engage and energise the rare disease community in leading actionable data sharing to accelerate medical product development for patients in need.

During the workshop, Kara and Scott will be presenting the RDCA-DAP platform, demonstrating how through the use of the Aridhia DRE’s FAIR Data Services researchers can discover the data they require, identify cohorts of interest within those datasets, how the data access request process is automated, and how data is delivered securely to secure Workspaces for collaborative research, providing for the development of novel tools and models that accelerate drug and therapy development to benefit the rare disease community.

Participants will learn about case studies shared by users of the platform, the impact of RDCA-DAP on accelerating drug development for rare diseases, and engage in discussions around data privacy and standards. They will also get to see live demonstrations of new platform features such as a cohort builder and dynamic visualisation tool, faceted dataset searching, built-in R Studio and Jupyter Notebook apps, and many more.

Attendees will have the opportunity to explore:

  • The impact of RDCA-DAP on drug development in rare diseases to date and envisioned impact for the future.
  • Perspectives from patients, regulators, and industry on current and future impact.
  • RDCA-DAP’s unique support of multiple use cases across rare diseases.
  • The role the rare disease community and patient advocacy groups can play in generating actionable solutions to accelerate drug development.

Registration for the annual workshop is limited, so reserve a spot today. Registration is free and open to all rare disease community members and stakeholders, including members of the press. View the current agenda here.