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

Galliano Zanello; Chun-Hung Chan; Samantha Parker; Daria Julkowska; David A Pearce

doi:10.3389/fmed.2024.1415963

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

Front Med (Lausanne). 2024 Nov 13:11:1415963. doi: 10.3389/fmed.2024.1415963. eCollection 2024.

Authors

Galliano Zanello^{1

2}, Chun-Hung Chan^{2

3}, Samantha Parker^{2

4}, Daria Julkowska^{1

2}, David A Pearce^{2

3

5}

Affiliations

¹ Institut National de la Santé et de la Recherche Médicale, Paris, France.
² International Rare Diseases Research Consortium, Paris, France.
³ Sanford Research, Sioux Falls, SD, United States.
⁴ Italfarmaco S.p.A, Milan, Italy.
⁵ Sanford School of Medicine, University of South Dakota, Sioux Falls, SD, United States.

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.

Keywords: IRDiRC; clinical research; clinical research networks; rare diseases; undiagnosed diseases.

Grants and funding

The author(s) declare that financial support was received for the research, authorship, and/or publication of this article. The IRDiRC Scientific Secretariat was funded by the European Union through the European Joint Programme on Rare Disease under the European Union’s Horizon 2020 Research and Innovation Programme Grant Agreement No. 825575. The Scientific Secretariat was hosted at the French Institute of Health and Medical Research (INSERM) in Paris, France.