A Brief History
of PROGRESS
We would like to welcome our newest participants by providing
a brief description of how PROGRESS began. In 1995, Drs.
Janet Stanford, Elaine Ostrander, and Leroy Hood began to work
together to understand prostate cancer genetics. To find the genes
that cause hereditary prostate cancer, they began to collect information
about families that fit the definition for hereditary prostate
cancer or HPC (see sidebar below for definition). In order
to get the word out about our study, Dr. Hood appeared on the
television talk show “Larry King Live” in November 1995
along with Michael Milken and General Norman Schwartzkopf. Mr.
Milken is a prostate cancer survivor and his foundation called
CaP-CURE provided funding to start the PROGRESS study.
General Schwartzkopf is also a prostate cancer survivor. As a
result of the television show, the PROGRESS office was
overwhelmed with calls from interested people willing to volunteer
for the study. In addition to the television show, information
about the study was sent to healthcare providers, employers, support
groups, and even posted on the Internet to find as many families
as possible that fit definition for hereditary prostate cancer.
As a result of these efforts, 266 families and more than 2,000
people are participating in PROGRESS. |
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DEFINITIONS
First-degree relative – a person who is directly
related to you by blood, such as your father, brother, or son.
Second-degree relative – a person who is related
by blood but who is not as closely related as a first-degree
relative. Examples of second-degree relatives are a grandfather,
uncle, or nephew.
Third-degree relative – a person who is more distantly
related to you by blood, such as a cousin or great-grandparent.
Hereditary prostate cancer (HPC) - Families with three
or more first-degree relatives with the disease; OR two first-degree
relatives diagnosed with prostate cancer before age 55; OR prostate
cancer diagnosed in three successive generations on either the
mother’s side or the father’s side.
Familial prostate cancer (FPC) – Families with
prostate cancer in two first-degree relatives; OR prostate cancer
diagnosed in one first-degree and two or more second-degree
relatives.
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New
Family Collection Effort Begins
The study of the 266 PROGRESS families is usually referred
to as a “family study” because we have collected information
and blood samples from people in each family. We aimed to collect
hereditary prostate cancer or HPC families. A family study of men
with HPC is very helpful for finding rare, inherited disease genes.
Because HPC is believed to cause less than 10% of the disease, we
are also interested in finding genes that may be involved in the
development of prostate cancer in men who don’t fit the HPC
criteria. When prostate cancer occurs more than once in a family,
such as in two brothers or a father and son, but affects fewer than
three very close relatives, it is called familial prostate cancer.
In addition to finding the rare genes that may cause hereditary
prostate cancer, we are also beginning a project that will help
to understand how important these genes may be in familial prostate
cancer. The study may also help us understand the role of normal
variations in more common genes in the development of prostate cancer.
For the new study, we will be recontacting men who participated
in an earlier study of prostate cancer conducted at the Fred Hutchinson
Cancer Research Center from 1993-1997. Participants in the earlier
study answered questions about whether they had a family history
of prostate cancer. We are now enrolling family members of these
participants. The collection of families that results from this
process is called a “population-based” family study because
men with prostate cancer who participated in the prior study were
all residents of the same geographic area or “population base.”
We hope that the information from this new study will help us understand
how common genetic variations may be related to prostate cancer. |
The
Next Step
As we mentioned in our last newsletter, we will be asking you to
participate in a follow-up survey for PROGRESS participants.
The survey will ask about any changes in your health or your family’s
health in the time after you completed the first PROGRESS survey,
as well as a few additional questions. As always, your continued
participation is completely voluntary. We plan to have the first
batch of surveys sent out by the end of this year. We will mail
the surveys in batches through 2002, so you may not receive your
survey this year. We understand many of you move to different parts
of the country throughout the year and we do try to keep your address
up to date. If you or your relatives are not receiving this newsletter
at your preferred address, please call or write to let us know the
best address at which to reach you. We want to be sure to find you
when we mail your survey! |
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Thank You!
You may remember from previous newsletters that we contacted some
participants for information about their deceased relatives. We
understand that it is sometimes difficult to provide details about
when and where a relative passed away.
We are very grateful for the help of those who responded to our
request. The death certificates for some relatives are needed
to confirm and document the causes of death.
As a result of the excellent response we received from PROGRESS
participants, we have collected 258 certificates for deceased
relatives. The death certificate information for these individuals
will be incorporated into the analysis of the PROGRESS
families to strengthen the statistical power of our study, which
we hope will provide new insights into how this disease may be
passed from one generation to the next.
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Keep In Touch
Please contact us if you have any updates
to share with us. You can reach us by:
Mail
The PROGRESS Study
Fred Hutchinson Cancer Research Center
1100 Fairview Avenue N., MW-814
Seattle, WA 98109-1024
Phone
Call us toll-free at 1-800-777-3035
E-mail
progress@fhcrc.org
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