Frontiers in Medicine (Nov 2024)

Fostering the international interoperability of clinical research networks to tackle undiagnosed and under-researched rare diseases

  • Galliano Zanello,
  • Galliano Zanello,
  • Chun-Hung Chan,
  • Chun-Hung Chan,
  • Samantha Parker,
  • Samantha Parker,
  • Daria Julkowska,
  • Daria Julkowska,
  • David A. Pearce,
  • David A. Pearce,
  • David A. Pearce

DOI
https://doi.org/10.3389/fmed.2024.1415963
Journal volume & issue
Vol. 11

Abstract

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Clinical research is an essential component to advance diagnosis and therapeutic development. In 2022, the International Rare Diseases Research Consortium (IRDiRC) and the European Joint Programme on Rare Diseases (EJP RD) brought together key stakeholders from across the globe to discuss common themes in clinical research networks (CRNs) for rare diseases. Various topics were raised during discussions including current state of CRNs, the need for new CRNs, multi-stakeholder perspectives on value of CRNs, and ways to collaborate on a global scale. Communication and coordination between various groups, taking advantage of existing experiences, can expedite establishment and execution of complex collaborations that will be necessary for CRNs. In this perspective, we discuss opportunities and highlight key considerations for developing successful collaborative CRNs across the globe.

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