Board of Directors
Robert B. Cameron, M.D.
UCLA Medical School
Nicholas J. Vogelzang, M.D.
University of Chicago
Brian Loggie, M.D.
Creighton University
Robert Ginsberg, M.D.
Memorial Sloan Kettering
Michael Harbut, M.D.
Wayne State University
Roger G. Worthington, Esq.
Dallas, Texas
Robert I. Komitor, Esq.
New York, New York
Susan Vento
St. Paul, Minnesota
Mouzetta Zumwalt-
Weathers
Cary, North Carolina
In Memorium
Congressman Bruce F. Vento
Bill Powell
Science Advisory Board
Harvey Pass, M.D., Chairman
Karmanos Cancer Institute
Victor Roggli, M.D.
Duke University
Robert N. Taub, M.D.
Columbia University
Lary A. Robinson, M.D.
H. Lee Moffit Cancer Center
Steve Hahn, M.D.
University of Pennsylvania
Joseph R. Testa, Ph.D.
Fox Chase Cancer Center
Claire Verschraegen, M.D.
University of New Mexico
Eric Vallieres, M.D.
University of Washington
Dan Miller, M.D.
Mayo Clinic
Raphael Bueno, M.S.
Harvard/Brigham and Women's
Hedy Lee Kindler, M.D.
University of Chicago
W.Roy Smythe, M.D.
M.D. Anderson/Univ. of Texas
Executive Director
Christopher E. Hahn
Santa Barbara, CA
MARF, inc.
1609 Garden Street
Santa Barbara, CA 93101
tel (805) 560-8942
fax (805) 560-8962
http://www.marf.org
c-hahn@marf.org
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Our Mission is to eradicate mesothelioma as a
life-ending disease.
August 12, 2002
Roger G. Worthington, Esq.
Law Office of Roger G. Worthington, P.C.
3219 McKinney Ave
Suite 1500
Dallas, Texas 75204
Re: National Mesothelioma Data/Tissue
Bank
Dear Mr. Worthington,
We are writing to ask for your firm's involvement in a
groundbreaking research project. As explained below, this
will require minimal expenditure on your firm's part,
but contribute greatly to the ability of science to
understand and eventually cure mesothelioma.
As you know all too well, a vast lack of information
surrounds mesothelioma. Patients are treated at a variety
of centers, with a wide variety of experimental treatments.
The clinical data necessary to compare the outcomes of the
various treatment approaches (both current and future) is
not being collected. Basic national incidence data is also
lacking, as is key information about the natural history of
the disease.
As the first step in developing this critical information,
MARF has teamed with UCLA to create the National
Mesothelioma Data/Tissue Bank. As detailed in the study
protocol (a copy of which is enclosed for your review)
clinical information (e.g., initial and ongoing symptoms,
treatments, lab and pathology reports, and outcome) will be
obtained from mesothelioma patients' medical records
and input into the databank. Once data on enough patients
is collected to allow meaningful analysis, it will be made
available to qualified researchers for study and scientific
publication. The initial goal is to obtain records on at
least 1000 patients per year.
To minimize the cost to those who participate in this
project, MARF is underwriting the cost of centralizing the
data input. Patients' medical records need merely be
sent to the data center at UCLA, where a research nurse
will cull the necessary information from the records and
input it into the database. To maintain total patient
confidentiality, the patient's identity will be coded,
and all personal information removed so that the database
is completely anonymous.
The patient medical records maintained by your firm are
thus hugely important. Your firm can make an invaluable
contribution to mesothelioma science by providing copies of
them to the database. A list of the most important types of
records is attached. Initially, we are asking you to send
copies of the medical records you hold only on patients who
are deceased, for neither medical nor legal confidentiality
issues apply to these records. (We are in the process of
obtaining approval of the study protocol by an Independent
Review Board. Once we have this approval, we will ask for
your records on living patients, and will provide an
informed consent form for them to sign.)
We are working fervently to start this exciting endeavor
and are anxious to have your participation and
collaboration. If you are willing to join, please call the
research nurse, Rusela Bodrejo, R.N. (310.794.7333), to
discuss the details of transmitting records to UCLA. Please
also feel free to call Dr. Robert Cameron at the same
number to further discuss this project. As you can imagine,
we are planning a large publicity effort to announce the
launch of the database in the next few weeks, and we hope
to be able to announce your firm as one of the initial ones
that have made this possible.
We look forward to hearing from you and thank you in
advance for your contribution to this essential step
forward in mesothelioma research
Sincerely,
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Robert B. Cameron, M.D.,F.A.C.S.
Principal Investigator
The Nation Mesothelioma
Data/Tissue Bank
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Christopher E. Hahn
Executive Director
The Mesothelioma Applied
Research Foundation, Inc.
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enclosures: Medical Records List
Database Study Protocol
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