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Multiple Myeloma Research Foundation (MMRF)
A myeloma foundation that built the most important open genomic dataset in the disease (CoMMpass) and funded much of the science behind today's therapies; also a patient support and navigation resource.
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