ACCELERATE: A Patient-Powered Natural History Study Design Enabling Clinical and Therapeutic Discoveries in a Rare Disorder

Geographically dispersed patients, inconsistent treatment tracking, and limited infrastructure slow research for many orphan diseases. We assess the feasibility of a patient-powered study design to overcome these challenges for Castleman disease, a rare hematologic disorder. Here, we report initial...

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Dades bibliogràfiques
Publicat a:Cell Rep Med
Autors principals: Pierson, Sheila K., Khor, Johnson S., Ziglar, Jasira, Liu, Amy, Floess, Katherine, NaPier, Erin, Gorzewski, Alexander M., Tamakloe, Mark-Avery, Powers, Victoria, Akhter, Faizaan, Haljasmaa, Eric, Jayanthan, Raj, Rubenstein, Arthur, Repasky, Mileva, Elenitoba-Johnson, Kojo, Ruth, Jason, Jacobs, Bette, Streetly, Matthew, Angenendt, Linus, Patier, Jose Luis, Ferrero, Simone, Zinzani, Pier Luigi, Terriou, Louis, Casper, Corey, Jaffe, Elaine, Hoffmann, Christian, Oksenhendler, Eric, Fosså, Alexander, Srkalovic, Gordan, Chadburn, Amy, Uldrick, Thomas S., Lim, Megan, van Rhee, Frits, Fajgenbaum, David C.
Format: Artigo
Idioma:Inglês
Publicat: Elsevier 2020
Matèries:
Article
Accés en línia:https://ncbi.nlm.nih.gov/pmc/articles/PMC7762771/
https://ncbi.nlm.nih.gov/pubmed/33377129
https://ncbi.nlm.nih.govhttp://dx.doi.org/10.1016/j.xcrm.2020.100158
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