Rare disease research requires (and benefits from) global collaboration: three examples from the Castleman Disease Collaborative Network

  • Hayley Williamson
  • Grant Mitchell Castleman Disease Collaborative Network
  • Emily Zhen Castleman Disease Collaborative Network
  • Auryn Enciso Castleman Disease Collaborative Network
  • Samantha Kass Newman Castleman Disease Collaborative Network; NYU Langone Medical Center
  • Deise Ahagon Castleman Disease Collaborative Network
  • Michael Croglio Castleman Disease Collaborative Network; Stony Brook University
  • Jason Ruth Castleman Disease Collaborative Network; Harvard Medical School
  • Raj Jayanthan Castleman Disease Collaborative Network; Meharry Medical College
  • Amy Yutong Liu Castleman Disease Collaborative Network
  • Alexander Suarez Castleman Disease Collaborative Network; University of Pennsylvania
  • David Fajgenbaum Castleman Disease Collaborative Network; University of Pennsylvania

Resumo

Castleman disease (CD) describes a heterogeneous group of rare and poorly understood lymphoproliferative disorders that can involve flu-like symptoms, multiple organ system dysfunction, and even death. Prior to 2012, the limited and disparate resources, including clinical data, tissue samples, and research funding, prevented the medical community from making positive strides towards understanding the pathogenesis of CD. The Castleman Disease Collaborative Network (CDCN) was created in 2012 to accelerate research and drug development for CD by facilitating global collaboration, strategically investing in high impact research, and engaging patients throughout the research process. The CDCN’s global collaborative network has been crucial for accelerating the understanding of CD. Together, the CDCN has already helped establish a uniform terminology system and a new model of pathogenesis. With the CDCN’s network in place and an ambitious international research agenda, further breakthroughs for CD are on the horizon. In this paper, we report three examples of how global collaboration has helped to advance CD research, which we believe can serve as models for other research networks and international investigators.

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Biografia do Autor

Grant Mitchell, Castleman Disease Collaborative Network

Castleman Disease Collaborative Network, Philadelphia, PA, USA.

 

Emily Zhen, Castleman Disease Collaborative Network

Castleman Disease Collaborative Network, Philadelphia, PA, USA.

 
Auryn Enciso, Castleman Disease Collaborative Network
Castleman Disease Collaborative Network, Philadelphia, PA, USA.
Samantha Kass Newman, Castleman Disease Collaborative Network; NYU Langone Medical Center
Castleman Disease Collaborative Network, Philadelphia, PA, USA; Department of Medicine, NYU Langone Medical Center, New York, NY, USA.
Deise Ahagon, Castleman Disease Collaborative Network
Castleman Disease Collaborative Network, Philadelphia, PA, USA
Michael Croglio, Castleman Disease Collaborative Network; Stony Brook University
Castleman Disease Collaborative Network, Philadelphia, PA, USA; School of Medicine, Stony Brook University, Stony Brook, NY, USA.
Jason Ruth, Castleman Disease Collaborative Network; Harvard Medical School
Castleman Disease Collaborative Network, Philadelphia, PA, USA; Department of Medical Oncology, Dana-Farber Cancer Institute, Harvard Medical School, Boston, MA, USA.
Raj Jayanthan, Castleman Disease Collaborative Network; Meharry Medical College
Castleman Disease Collaborative Network, Philadelphia, PA, USA; School of Medicine, Meharry Medical College, Nashville, TN, USA.
Amy Yutong Liu, Castleman Disease Collaborative Network
Castleman Disease Collaborative Network, Philadelphia, PA, USA
Alexander Suarez, Castleman Disease Collaborative Network; University of Pennsylvania
Castleman Disease Collaborative Network, Philadelphia, PA, USA; Department of Medicine, Division of Translational Medicine & Human Genetics, University of Pennsylvania, Philadelphia, PA, USA.
David Fajgenbaum, Castleman Disease Collaborative Network; University of Pennsylvania
Castleman Disease Collaborative Network, Philadelphia, PA, USA; Department of Medicine, Division of Translational Medicine & Human Genetics, University of Pennsylvania, Philadelphia, PA, USA.
Publicado
2016-08-29
Como Citar
Williamson, H., Mitchell, G., Zhen, E., Enciso, A., Newman, S., Ahagon, D., Croglio, M., Ruth, J., Jayanthan, R., Liu, A., Suarez, A., & Fajgenbaum, D. (2016). Rare disease research requires (and benefits from) global collaboration: three examples from the Castleman Disease Collaborative Network. Revista De Medicina, 95(spe3), 24-29. https://doi.org/10.11606/issn.1679-9836.v95ispe3p24-29