The
Accomplishments of PCRI
Brief History
In 1984, Stephen B. Strum MD, a medical oncologist practicing
in California since 1973, was inspired by a patient with prostate
cancer to collaborate
with Fernand Labrie of the Laval University in Quebec City, Canada
on the use of an anti-androgen, Euflex, combined with an LHRH agonist
drug called
D-tryp-6. These agents had not been studied in-depth in the treatment
of prostate cancer. This was five years before Eulexin (Flutamide)
and Lupron
(Leuprolide) were given FDA approval in the United States.
This early association with Dr. Labrie in clinical research on the
use of combined androgen blockade in the treatment of advanced
prostate cancer
led to a change in the composition of the patient population seen
by Dr. Strum. By the late 1980s, approximately 20% of the patients
in Dr. Strum's
general medical oncology practice were prostate cancer patients.
This percentage increased to 80% by 1995.
In 1994, Dr. Strum began contributing after-hour's work to help
patients on the CompuServe Cancer Forum section dedicated to
prostate cancer.
This site gained increased activity and Dr. Strum decided that
the Internet
was the most promising technology to reach a larger audience.
Over the ensuing years, he volunteered his services extensively on
the
prostate
cancer forum called P2P or Patients
to Physicians that he helped to create.
In 1995, Dr. Mark C. Scholz joined Dr. Strum's practice, and
the entire focus of their work became treatment of prostate
cancer patients. This
partnership was named Healing Touch Oncology (HTO). During
this time of change, the idea of a non-profit organization that could
further
the cause
of the prostate cancer patient came into being. In July of
1996,
a non-profit foundation was formed through collaborative efforts
of HTO and the Daniel
Freeman Marina Hospital in order to fund the Institute for
Prostate Cancer Research (IPCR). IPCR was incorporated as a non-profit
on Jan 27, 1997. The name was changed to the Prostate Cancer
Research Institute
(PCRI) on March 12, 1998.
Drs. Strum and Scholz were hopeful that an organization combining
insightful clinical research with high-level
educational activities, directed to both
the patient and the physician, would greatly enhance outcomes
for prostate cancer patients everywhere. In this vein, HTO
had already
embarked on leading
edge clinical work. In fact much of this work had been initiated
by Dr. Strum beginning back in 1984 and had been further
developed over the ensuing
years. This is supported by the publications on prostate
cancer pre-dating the creation of PCRI. Educational activities
were stepped up
in December 1997, with two full-time Educational Facilitators,
Jonathan McDermed, PharmD,
and Harry Pinchot, a prostate cancer patient. Early activities
included working with various prostate cancer support groups
and providing
a helpline for people dealing with prostate cancer. Drs.
Strum and Scholz worked after
hours to contribute their professional skills in the realm
of leading edge work on prostate cancer. In addition, they
shared
this information
via
lectures and published material, thus combining the findings
of their clinical research with those of others with the
goal of educating
patient-physician
teams to optimize the outcomes of patients.
Dr. Strum served as the Medical Director of PCRI until June
of 2002. During that period, PCRI expanded the Helpline,
initiated a Web site
and newsletter,
and produced several national and regional conferences.
Since his resignation, PCRI has focused the bulk of its energy
on providing
prostate cancer education
to individuals dealing with the disease.
Our Mission
The Prostate Cancer Research Institute mission is to improve the quality
of men’s lives by supporting research and disseminating information
that educates and empowers patients, families and the medical community.
Clinical Research from PCRI
PCRI has been involved in major inroads in prostate cancer therapy,
inroads that have a direct effect on the quality as well as the length
of life for men with prostate cancer. Areas of involvement include:
Publications with Full References
PCRI has produced many publications representing
years of combined patient care coupled with clinical observation
and medical writing. This achievement, in the setting of
a non-profit organization
that has been essentially funded by patients, is a highly
unusual achievement.
Educational Activities of PCRI
A. PCRI Helpline
The PCRI Helpline is unique
in the way it interacts with callers seeking help in understanding
and
dealing with this disease. The "callers" include men
with prostate cancer, their families and friends, or physicians.
The overwhelming majority of the Helpline interactions, which reaches
fifty
phone calls, emails or faxes per day, pertain to education for
a prostate cancer patient. The Helpline staff person (i.e. "Facilitator")
works with the caller to extract vital medical information, which
is essential to assess the nature and extent of the disease so that
they
can provide information that is both accurate and relevant to the
caller's situation. In such a manner, they "facilitate" the
patient's communication with his physicians to obtain a successful
outcome.
The Helpline Facilitators provide medical information but do not
give medical
advice.
PCRI Facilitators have been intensely trained about prostate cancer
by the Dr. Strum and other PCRI Medical Advisors. They have also
spent countless
hours reviewing PCRI educational materials. They have access to a
Board of Medical Advisors to
obtain ideas and information pertinent to an individual situation.
The Helpline staff reviews medical articles from The Journal of Urology,
Urology, the Journal of Clinical Oncology, The Oncologist and Cancer
to stay current with the latest developments in prostate cancer research
and treatment. Moreover, educational group emails are sent to PCRI
staff to highlight important concepts. Further, each Helpline Facilitator
does continual additional research as needed to stay abreast of current
developments.
There is no other prostate cancer education and research organization
performing this function with a Board of Medical Advisors, trained
in the specialty of prostate cancer, constantly educating and evaluating
its Helpline staff.
B. PCRI Insights
Insights is a
sophisticated quarterly newsletter directed at an empowered prostate
cancer community.
The first issue of Insights was published in October of
1998. In this and subsequent issues new developments in the evaluation
and
treatment
of prostate cancer have been introduced with highly focused reviews
and outstanding graphics. Insights is being sent to more
than 20,000 individuals,
including prostate cancer patients, their families and friends. In
addition, interested urologists, medical oncologists, and radiation
oncologists
who are members of the American Urologic Association, the American
Society of Clinical Oncology and the American Society for Therapeutic
Radiation
Oncologists, respectively, receive Insights on a complimentary
basis. Insights subscribers are located in the United States,
Canada and many countries around the world.
C. PCRI Lectures
PCRI has presented over 150 lectures on a wide variety of prostate
cancer topics to conferences and support groups. The PowerPoint
slides for many of
these are available for viewing on the Web site.
D. PCRI Conferences
Since its inception, PCRI has been instrumental in the planning
and presentation of national
and regional conferences that have attracted
audiences as large as 1500. The conferences have provided patients and
their caregivers with the latest information on diagnosis and treatment
along with
ways to deal with all aspects of prostate cancer. They have included lectures
from many of the leading physicians and scientists in the field. Additionally,
most of the presentations were captured on videos and
are available for purchase. These have provided the basis for programs
at hundreds of support group meetings. These fantastic experiences have
been made possible by a number of generous sponsors and a legion
of dedicated volunteers.
E. The PCRI Web Site
The PCRI Web site at www.prostate-cancer.org or www.pcri.org was
created in 1998 and currently averages over 100,000 page views per
month. The Web
site
contains a wealth of information that includes papers published by Drs.
Strum and Scholz as well as the medical articles by other leading prostate
cancer
specialists that have appeared in Insights. All issues of Insights may
be downloaded for viewing and/or printing, and Software
Programs designed by Dr. Glenn Tisman facilitate evaluation and
prognosis of the individual
patient. The Web site makes available over 30 PowerPoint
presentations,
the results of hundreds
of hours of work. PCRI was one of the first prostate
cancer resource organizations to use Webcasting as an educational tool.
In
addition, the site has the following new or enhanced features:
- an interactive Glossary that
is probably the most comprehensive of its kind for prostate cancer
patients.
- a Forms section that describes the objectives of each part of the medical
record and allows free
downloads of sample forms that focus on specific areas of information
that is exchanged
between patient and doctor.
- an extensive Resources section which provides links to tools of empowerment
- articles from Insights that
have been converted for online viewing with medical terms hyperlinked
to the Glossary definition.
- an internal search function utilizing the Google™ search
engine
- a Spanish language section containing the translations of
key papers
- an Events section that lists major upcoming events that relate to prostate
cancer
On the home page of the Web site is a link to a Pamphlet entitled "What
You Should Know About PC",
now in its second edition. PCRI has created and sent out over
100,000 copies of this pamphlet, which details what active
roles you can take in the prevention
and early detection of prostate cancer. This publication is
also available in Spanish. We also find this to be a valuable
resource for family members
of men with prostate cancer and for women with breast cancer
due to the genetic links between the two diseases and the genetic
factors relating
to transmission
of prostate cancer to family members.
The Prostate Cancer Research Institute
PCRI is a 501(c)(3) not-for-profit education and research organization
that advances awareness and monitoring of ever-expanding and evolving
treatments available to improve outcomes for prostate cancer patients.
The Federal Tax ID # is 95-4617875 and qualifies for maximum charitable
gift deductions by individual donors.
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5777 W. Century Blvd. Suite 800
Los Angeles, California 90045
Telephone (310) 743-2116 Fax (310) 743-2113
Helpline (310) 743-2110 or (800) 641-PCRI
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