Work

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

Year: 2024

Type: article

Abstract: 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.

Source: Frontiers in Medicine

DOI: 10.3389/fmed.2024.1415963

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

Institutions: Inserm, Sanford Research, Italfarmaco (Italy), University of South Dakota

Language: English

Topic: Interdisciplinary Research and Collaboration

Subfield: Information Systems and Management

Field: Decision Sciences

Domain: Social Sciences

SDGs: Partnerships for the goals, Good health and well-being

Open Access status: gold

Estimated APC paid: $3,295