# Multiple Myeloma Research Foundation (MMRF)

Source: https://onco.cc/collections/mmrf/  
OnCo record `mmrf` (Collection). Data CC BY-NC 4.0, attribute "Data from OnCo (onco.cc)"; commercial use needs a licence.

## TL;DR

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.

## Summary

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.

## Fields

- Kind: Collection
- Last checked: 2026-09-08
- Tags: gap-fill; patient-org
- URL: https://themmrf.org/
- 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

## Sources

- MMRF: https://themmrf.org/
- CoMMpass: https://themmrf.org/finding-a-cure/our-work/the-mmrf-commpass-study/

## Connected records

- cancers: [Multiple myeloma](https://onco.cc/cancers/multiple-myeloma/)
- targets: [BCMA](https://onco.cc/targets/bcma/), [CD38](https://onco.cc/targets/cd38/), [GPRC5D](https://onco.cc/targets/gprc5d/)
- technologies: [RNA sequencing & expression profiling](https://onco.cc/technologies/rna-seq/), [Whole-exome & whole-genome sequencing](https://onco.cc/technologies/wes-wgs/)
- companies: [Multiple Myeloma Research Foundation and Myeloma Investment Fund](https://onco.cc/companies/mmrf-myeloma-investment-fund/)
- terms: [High-risk cytogenetics (myeloma)](https://onco.cc/terms/high-risk-myeloma/), [MRD negativity (myeloma, 10⁻⁵ / 10⁻⁶)](https://onco.cc/terms/mrd-negativity-myeloma/), [R-ISS / R2-ISS staging](https://onco.cc/terms/r-iss/)

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