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New Database Assists Myeloma Research

October 14, 2004 | Read Time: 2 minutes

The Multiple Myeloma Research Consortium is using a powerful shared database to link four leading medical-research centers to try to accelerate the development of drugs to treat the disease.

A cancer of the plasma cell, multiple myeloma has no known cure. In 1998, after she was diagnosed with the disease at age 37, Kathy Giusti co-founded the Multiple Myeloma Research Foundation, in New Canaan, Conn., to raise money to support multiple myeloma research. Since then the foundation has raised more than $33-million, which has supported studies at 51 laboratories, including research that contributed to the recent approval of Velcade, the first new myeloma drug in more than a decade.

The foundation has always asked medical centers for proposals in which several institutions work together. But, says Ms. Giusti, when progress reports on its grants arrive, it is usually clear that one center is doing most of the work, and the centers aren’t collaborating much with one another.

So Ms. Giusti started a new organization, the Multiple Myeloma Research Consortium, to foster greater cooperation among medical institutions. Four cancer-research centers — the Dana-Farber Cancer Institute, in Boston; the Mayo Clinic, in Scottsdale, Ariz.; the H. Lee Moffitt Cancer Center & Research Institute, in Tampa, Fla.; and the University Health Network, in Toronto — have signed membership contracts, agreeing to work together on research studies and to share intellectual-property and publication rights.

One of the challenges that researchers face is the scarcity of multiple myeloma tissue. Ms. Giusti explains that doctors use a bone-marrow biopsy to diagnose the disease, and because multiple myeloma is a relatively rare cancer, affecting only 50,000 patients in the United States, the tissue samples tend to be scattered around the country.


To help solve that problem, the consortium is developing a shared tissue bank. The tissue samples that the institutions accrue will be processed, evaluated, and stored using uniform procedures.

Participating institutions will also use a common database to record genetic information about the tissue samples and patients participating in drug trials, as well as the clinical results of those trials. That way, when a drug works for patients in a trial, the scientists can go back and look for similarities in the patients who responded well.

“We don’t want to just know that a drug works in 10 percent of the cancer population,” says Ms. Giusti. “We want to know that the drug works in 100 percent of the patients that had a certain component of that kind of cancer.”

For more information: Go to http://www.themmrc.org.

About the Author

Features Editor

Nicole Wallace is features editor of the Chronicle of Philanthropy. She has written about innovation in the nonprofit world, charities’ use of data to improve their work and to boost fundraising, advanced technologies for social good, and hybrid efforts at the intersection of the nonprofit and for-profit sectors, such as social enterprise and impact investing.Nicole spearheaded the Chronicle’s coverage of Hurricane Katrina recovery efforts on the Gulf Coast and reported from India on the role of philanthropy in rebuilding after the South Asian tsunami. She started at the Chronicle in 1996 as an editorial assistant compiling The Nonprofit Handbook.Before joining the Chronicle, Nicole worked at the Association of Farmworker Opportunity Programs and served in the inaugural class of the AmeriCorps National Civilian Community Corps.A native of Columbia, Pa., she holds a bachelor’s degree in foreign service from Georgetown University.