Ways to Educate Yourself
Use NCI Resources
Find Local Clinical Trials in Your Community
Attend Conferences, Meetings, and Workshops
What You Can Do
Use NCI resources to keep up-to-date with new
clinical trial information, including www.cancer.gov
Find local clinical trials in your community
Attend conferences, meetings, and workshops
Why?
Introduction
One of the most important ways to get started in clinical trial
outreach and education is to make sure you learn as much as you can
about clinical trials. This section describes ways you can learn more
about clinical trials.
Education and Outreach in Action
A 60-year-old insurance salesman was treated for prostate
cancer 2 years ago. He recently decided that he wanted to learn
more about clinical trials after he saw a TV special about them.
"I'm amazed about what I don't know about what clinical trials are
going on right here in (my community). I want to make sure that
men who go to my support group understand information about
clinical trials."
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The NCI Web site, www.cancer.gov,
contains information from PDQ®, including the latest information
about cancer treatment, screening, prevention, genetics, supportive
care, and complementary and alternative medicine, as well as a
registry of cancer clinical trials. Clinical oncology specialists
review current literature from more than 70 medical journals,
evaluate its relevance, and synthesize it into clear summaries, which
are then reviewed monthly and updated as needed based on new
information. Most cancer information summaries appear in two
versions: a technical version for the health professional and a
nontechnical version for patients, their families, and the public.
Many of the summaries are also available in Spanish.
The NCI Web site also includes approximately 100 fact sheets on
various cancer-related topics and information on ordering NCI
publications, as well as educational features and news summaries
concerning the latest results from cancer clinical trials.
The clinical trials registry (PDQ) contains more than 1,800
ongoing clinical trials, with information about studies around the
world. All clinical trials undergo review prior to inclusion.
Although no single resource lists every cancer clinical trial being
conducted in the United States and abroad, PDQ is the most
comprehensive cancer clinical trials registry, and contains
information about trials sponsored by NCI, the pharmaceutical
industry, and some international groups. Users can narrow their
retrieval by multiple parameters, such as stage of disease, phase of
trial, treatment modality, and geographic location. PDQ also contains
an archival file of more than 11,000 clinical trials that are no
longer accepting patients, including contact information for the
principal investigators of trials that may not yet be published in
the biomedical literature.
Accessing Information from NCI
NCI's Cancer Information Service
NCI's Cancer Information Service is a national information and
education network for patients, the public, and health professionals.
From regional offices covering the entire United States, Puerto Rico,
and the U.S. Virgin Islands, trained staff provide the latest cancer
information through a toll-free telephone service. Staff can respond
to calls in either English or Spanish.
How to Reach the CIS
The toll-free number is 1-800-4-CANCER (1-800-422-6237). For deaf
and hard of hearing callers with TTY equipment, the number is
1-800-332-8615. Hours of operation are Monday through Friday, 9:00
a.m. to 4:30 p.m., local time. Callers also have the option of
listening to recorded information about cancer 24 hours a day, 7
days a week.
See the Guide to Finding Clinical Trial Resources for other sources of clinical trial information.
A good way to educate yourself about clinical trials is to become
familiar with both the local institutions conducting clinical trials
and the clinical trials themselves. As you begin to think about ways
you would like to take action, it will be important for you to
understand where clinical trials are taking place.
Creating a List
You may want to create a list that identifies cancer clinical
trials in your community. Collecting this information using the
"Clinical Trial Community Resource Sheet" here can help you
direct interested community members to the best clinical trial
resources available.
This information can help you:
Understand clinical research in your community
Understand some of the barriers to participating in
clinical trials in your community
Provide local clinical trial resources to the organizations
or individuals with whom you are working
Clinical Trial Community Resource Sheet
You may use this sheet as a reference for yourself or your
organization, or you may develop it into a local fact sheet for
distribution. Remember that clinical trial information becomes out of
date very quickly, so you will need to update this sheet at least
every 3 months. To locate information needed to complete this
worksheet, you can:
Call the National Cancer Institute's (NCI's)
Cancer Information Service at 1-800-4-CANCER. Trained information
specialists can search the NCI clinical trial database, PDQ, and
provide contact information for local trials.
Visit the Web site www.cancer.gov, to search the PDQ
database on your own.
Use the clinical trial resources sheet that follows for
other ways to find local trials.
Type of Trial/ Type
of Cancer
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Phase
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Protocol ID#
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Institution
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Point of Contact
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Phone
Number
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Guide To Finding
Clinical Trial Resources
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National Cancer Institute's PDQ
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What is it?
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How do I access it?
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What will it provide?
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Database produced by NCI
Registry of approximately 1,800 active cancer clinical
trials
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Go to http://cancer.gov/clinicaltrials/
Use the search form
OR
Call 1-800-4-CANCER
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Summaries about clinical trials conducted by
NCI-sponsored researchers, the pharmaceutical industry, and
some international groups
|
National Library of
Medicine
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Database produced by NIH Registry now lists 4,000
primarily NIH-supported clinical studies on many conditions,
and more will be added
All trials on PDQ are listed in this database
|
Go to www.clinicaltrials.gov
Can browse by disease or sponsor or insert key words
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Summaries about clinical trials for a wide range of
conditions-most of the trials listed are sponsored by
NIH
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Local Cancer Center Web Sites
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Locally produced Web sites that include listings for
trials sponsored by NCI and some pharmaceutical
companies
Good supplementary resources for locating clinical
trials; a cancer center may begin participating in an
NCI-sponsored trial before the center's information is
listed in PDQ
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Different sites can be found through:
PDQ and National Library of Medicine Web
sites
Local institutions
Information on trials taking place at NCI's Clinical
Center in Bethesda, Maryland, is available at http://ccr.nci.nih.gov
Some centers may also have telephone information
centers
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Information that varies from center to center
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Examples of Pharmaceutical Resources/Internet Clinical
Trial Matching Sites
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Pharmaceutical Research and Manufacturers of America
(PhRMA) publishes a list of new cancer drugs in
development
CenterWatch's Clinical Trials Listing Service lists many
industry- and Government-sponsored trials
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PhRMA
Go to www.phrma.org/
Click on "New Medicines in Development."
The drugs are listed by cancer type or call 202-835-3400.
CenterWatch
Go to www.centerwatch.com
Click on "Trial Listings"
EmergingMed.com
Go to www.emergingmed.com or call 877-601-8601
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Descriptions, sites, telephone numbers and investigator
names by State
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Some people find that attending scientific meetings keeps them up
to date, helping them become better educators.
Local Meetings and Courses
Many local hospitals and cancer centers hold public events,
educational workshops, and lectures on a variety of topics related to
clinical trials. Contact your local institution's community relations
department to find out if it holds such events and when they are
scheduled.
Learning through the Internet
Many of the large cancer centers have free online courses for the
public, some of which may be related to clinical trials. See the Web
site www.cancer.gov for a list of NCI-designated cancer centers and
their Web sites to learn more about specific online courses.
National Meetings
Scientists present the results of their research at large meetings
before the results are published in the literature. Two annual
meetings of importance to cancer research are:
American Association of Cancer Research in March of each year
(Web site is www.aacr.org)
American Society of Clinical Oncology in May of each year (Web
site is www.asco.org)
Both feature daily meeting updates on their Web sites.
Many scientific meetings are open and free to the public. Others
have reduced fees for survivors or advocates.
The NCI event calendar provides a centralized and easily
accessible place to obtain information about many cancer-related
scientific meetings and events nationwide. The calendar can be found
on the Web at www.cancer.gov. You
can also call 1-800-4-CANCER to get information about these
meetings.
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