9:30 am – 10:15 am 3/26/2015, Keynote: Kathy Giusti, Founder & Executive Chairman of the Multiple Myeloma Research Foundation, @ MassBio Annual Meeting 2015, Cambridge, MA, Sonesta Hotel, 3/26 – 3/27, 2015
Dr. Aviva Lev-Ari will be in attendance on March 26, 2015, 8:00AM to March 27, 2015, 2:00PM
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Keynote: Kathy Guisti, Founder & Executive Chairman of the Multiple Myeloma Research Foundation (MMRF) and Multiple Myeloma Research Consortium (MMRC)
Kathy Giusti is the Founder of and Executive Chairman of the Multiple Myeloma Research Foundation (MMRF) and the Multiple Myeloma Research Consortium (MMRC). She is also a multiple myeloma patient. Kathy has led the MMRF in establishing collaborative research models in the areas of clinical trials, genomics, and tissue banking. These models have dramatically accelerated the pace at which lifesaving treatments are brought to patients and improved our understanding of the disease’s biological underpinnings. Today, Kathy is widely recognized as a champion of open-access data sharing and a strong advocate for patient engagement. Her leadership has earned her several prestigious awards and recognitions. Most recently, she was ranked #19 on Fortune Magazine’s Worlds’ 50 Greatest Leaders. In 2013, she was named an Open Science Champion of Change by the White House. In 2011, she was named to the TIME 100 List of the world’s most influential people. Kathy has been featured on several media outlets, including CNN Money, NBC Nightly News, and the Today Show, as well as in the New Yorker, the New York Times, and The Wall Street Journal. Kathy serves on the Harvard Business School Health Advisory Board and previously served on the President’s Council of Advisers on Science and Technology National Cancer Advisory Board and the National Cancer Policy Board. Kathy received her MBA in general management from Harvard Business School. She holds an honorary Doctorate from the University of Vermont.
VIDEO Shown
Cancer research system, academic center must publish, MMRF – builds the largest data set in Research, dissect the genome of ALL Myeloma Patients. Sequencing the most diverse skin cancer. draw knowledge from one cancer to another cancer. Trials, Drugs — Myeloma is the leader in Cancer Research.
LIVE PRESENTATION
Accelerating Treatment — A MODEL, not the only one
MMRF — the unifier is Acceleration and Efficiency — right treatment to right patient, combination medicine to be used in Personalized Medicine.
Myeloma as MODEL
- Outcome seen the best – 7 drugs approved 60% survival rate increased, Triples life expectancy, 3 treatment under review in FDA
- Heterogeneous, complex
- Pharma in partnership
- Unified Community: Technology, Pharma, MA key contributor
Barriers to Solutions
- Barries: Scientists – MMRF Grant Program
- No easy way to collaborate – MMRF tissue bank, clinical network
- No one Disease — MMRF COMMpass Study
- No easy way to share -MMRF Researcher Gateway
Data bank – $40Million — Genome data is a Consortium — Now in public domain
Data base (4000 samples) –>>> The Learning Network (300 Scientists) –>> The Clinic –>> the Patient
BRAF: Discovery to Clinic
- Building the Data Bank: CoMMpass Study
- CLIA
- Patient Registry
- Learning Center: GNS Healthcare, Amgen, tgen, jansse, Mayoclinic, MMRF: Data Jamboree 4/10/2015 @GNS
- Clinical Expansion – New Diagnostics approaches
- Immunotherapy,
- Targeted therapies,
- Novel Mechanisms
6. Patient Journey: Induction therapy
Gaps in Knowledge: Assess Cost, Means of Payment
- delayed diagnosis
- Passive Oncologist choice
- insufficient knowledge
- passive treatment choice
- Misperceptions on Clinical Trials
A world WHere
Illumna, Sales Force, — Simply the WOrld from the Mutation to the Treatment, standardize, more data comes to the system.
Defining Value
Many models – MMRF is One model — the most successful model
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