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Multiple Myeloma Research Foundation (MMRF)
The Multiple Myeloma Research Foundation, founded by a patient in 1998, built CoMMpass, the largest open longitudinal genomic dataset in myeloma with 1,143 patients followed for over eight years, and helped fund early trials of bortezomib, lenalidomide, daratumumab and CAR-T. It also runs patient navigation and an immunotherapy hub.
Overview
Founded 1998 by Kathy Giusti (a patient). CoMMpass (2011-) followed newly diagnosed patients with whole-genome, exome and RNA sequencing over 8+ years, producing dozens of papers and the basis of new risk models; data are shared with academia and industry. The MMRF helped fund early trials of bortezomib, lenalidomide, daratumumab and CAR-T, runs the Multiple Myeloma Research Consortium of academic centres, and provides patient navigators and an Immunotherapy Hub. Frequently cited as the template for patient-founded research organisations.
URL
Holds
CoMMpass longitudinal genomic study (1,143 patients, open data), MMRF CureCloud, Myeloma Accelerator Challenge, patient navigation, and a venture arm; the model of a data-driven disease foundation.
Licence
CoMMpass data via dbGaP / MMRF Researcher Gateway
Maintainer
MMRF
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