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1.1 |
Who
can use your trial searching features? |
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The search features of this website are
available to anyone seeking information about cancer clinical trials. The Trial
Lookup feature is helpful to people searching for cancer clinical
trial(s) by trial ID, trial name/title, cancer type, drug, location, keyword,
and more.The Screening Questionnaire is a tool written in lay language
to help match cancer patients to trials relevant to a specific type and stage
of cancer, or other characteristics. |
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1.2 |
I am not comfortable using
the database. Is there another way to get help? |
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Yes. Call 1-877-227-8451 .You can
receive telephone assistance Monday - Friday 8:30 AM - 8:00 PM EST through a
collaboration of the Coalition and the American Cancer Society.Cancer clinical
trial specialists at the ACS are trained to help navigate you through available
research studies.Within minutes, you can learn about trials relevant to your
situation and located near your home. For general questions, please write us at
info@CancerTrialsHelp.org. |
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1.3 |
Is there a cost for using
your services? |
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No. The services provided by the Coalition
and its collaborators are free to all users. |
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2.1 |
Which clinical trials are
included in your database? |
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This website provides information about
clinical trials for all types of cancer. |
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2.2 |
Are there different types of
clinical trials for cancer? |
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Yes. This website presents trial information
according to three general categories of clinical research studies: Treatment,
Supportive Care and Prevention. There is a fourth category called Other
for trials that do not fit into one of the three main categories. Examples of
Other trials include: screening, diagnosis, observation, bio-marker
development, etc. |
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2.3 |
Where do you get the
information in your database? |
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This website relies upon data imports from
the main clinical trial registry of the U.S. Government Department of Health
and Human Services (HHS), called
www.clinicaltrials.gov. This registry was developed, and is maintained
by the National Library of Medicine for the National Institutes of Health, a
division of HHS. It is the primary registry in the U.S. for clinical trials in
all diseases, including but not limited to cancer (CancerTrialsHelp.org imports
only the cancer trials information). The NIH has an agreement with the U.S.
Food and Drug Administration (FDA) to use clinicaltrials.gov for compliance
with the FDAAA statute requiring all applicable trials to be registered, which
makes clinicaltrials.gov a legal requirement for study sponsors to register all
trials that have endpoints involving a health-related outcome. Data from
clinicaltrials.gov passes through a federal cancer database, the
Physician Data Query (PDQ ®), which is maintained by the
National Cancer Institute (NCI), a division of NIH. These two federal
registries are linked, which allows them to exchange data on a regular basis
and then make the information available to public sources like this website.
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2.4 |
Is Cooperative Group trial
information different from trials by other sponsors? |
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Yes, the information about the locations
where trials are available is different. |
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2.5 |
Why is location information
different for Cooperative Group trials? |
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All medical research facilities (cancer
centers, hospitals, community hospitals, oncology practices, etc.) affiliated
with the Cooperative Groups are required to provide information to the
regulatory division of the National Cancer Institute (NCI) that confirms that
their Institutional Review Board (IRB) has approved a trial to open and enroll
patients at that facility. Research sites are also required to notify the NCI
regulatory division when the trial is no longer available to patients. The
Coalition is responsible for collecting and maintaining this information for
all of the Cooperative Groups and the NCI, through a government contract. The
Coalition supplies this information to the database on our website through a
data feed that is separate from the data coming in from the federal registries.
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2.6 |
Are Cooperative Group trials
presented differently than trials by other sponsors?
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Yes. The mission of this website is to
provide the public with information about research that is conducted by the
Cooperative Groups. In keeping with this mission, Cooperative Group trials are
listed first in search results so that visitors to this web site are clearly
informed of which trials are from the Cooperative Groups versus trials by other
sponsors. As an additional service to our website visitors, we also display
trials by all other sponsors that have registered their studies in the federal
databases. We do this because we believe that the search features provided on
this site are not only very user-friendly and helpful, they are also unique
from other web sites. In this way, the web site helps individuals find all
federally registered trials that are relevant to your search criteria,
including but not limited to Cooperative Group studies. |
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2.7 |
How often is the information
in the database updated?
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For Cooperative Group studies, the database
is updated real-time as individual medical research facilities (cancer centers,
hospitals, community hospitals, oncology practices, etc.) provide IRB approval
information to the regulatory body of the NCI. For all other trials by other
(non-Cooperative Group) sponsors, the information is updated weekly or monthly
varying by the frequency of downloads from the NCI’s PDQ® system (see above).
The NCI sends weekly hot fixes that are reflected in the database, as well as
monthly feeds of new information. |
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2.8 |
How accurate is the
information? |
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Cooperative Group information contained in
the database comes directly from its official source—the research facilities
participating in the studies. We have a high level of confidence in this data
because the Coalition is directly involved with its maintenance. However,
non-Cooperative Group trial records come to us via the federal trial registries
described above; therefore, we rely on their diligence for accuracy. |
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2.9 |
How can I view attachments? |
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Attachments are published in Adobe's Portable
Document Format (PDF) files. This format allows documents to be viewed and
printed by users regardless of your operating system. Viewing these files
requires installing the Adobe Acrobat Reader on your computer. The viewer is
available free from Adobe at
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3.1 |
I am a patient. Can this
website tell me if I am eligible to join a cancer clinical trial? |
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No. The Screening Questionnaire on
this web site can help you develop a list of available trials that match your
specific medical condition, but it cannot confirm that you are eligible to
participate in a trial. Only a physician who is directly involved with the
trial(s) can confirm your eligibility through a medical examination. On this
web site, every cancer clinical trial in the database includes locations and
contact information for participating medical facilities. |
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3.2 |
What does it mean to be
eligible for a cancer clinical trial? |
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There are guidelines for every study with a
description of who is eligible and who can or cannot participate in the
clinical trial. Examples of these eligibility criteria may include type, age,
gender, medical history and current health status. The Screening Questionnaire
on this website is coded to the eligibility requirements in each trial record,
so that it can assist you in determining which trials are available for your
type and stage of cancer. |
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3.3 |
Can I enroll myself onto a
cancer clinical trial using your website? |
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You cannot actually enroll yourself in a
trial using this, or any other website. You must be under the care of a
physician who is directly involved in cancer research and clinical trials. If
you are already under the care of a cancer specialist, they are your best
resource for finding clinical trials. If you are not sure, ask your oncologist
if he or she participates in medical research. |
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3.4 |
I want to search for clinical
trials. Where do I start? |
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On “Search for Trials” section of this
website, you will find two options. First, the Screening Questionnaire is
a matching tool that helps cancer patients find trials that are likely to be an
option for treatment. It asks a short list of questions about a cancer
patient’s gender, cancer type, prior treatment, cancer stage and daily
activity. The eligibility requirements for every trial in the database are
coded to these questions. The answers provided by users instruct the database
on which trials to list in the search results. Second, the Trial Lookup feature
is for users seeking for specific trials by trial ID, trial name, cancer type,
drug, state, country, keyword and more. |
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3.5 |
I am looking for a referral
to a cancer specialist. Where do I start? |
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At this time, the federal data imports that
we receive contain information about the medical facilities where trials are
available. Sometimes the records include contact information for participating
physicians however, we are aware that the data is not always complete. For
individuals seeking a referral to a cancer specialist, we recommend that you
can use the Screening Questionnaire to match yourself to one or more
trials. Be sure to enter your zip code at the start of your search. When you
have completed the questionnaire, you will see a results page that lists one or
more trials that match your search criteria. Click on any of the trials to open
up the trial record, which includes a list of medical facilities where the
trial is available. Facilities closest to your zip code will appear first.
Click on the facility name to obtain contact information. Again, some trial
records contain contact information for physicians and some do not. You will
need to contact the medical facility to obtain a referral to a physician at
that facility. |
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3.6 |
I completed the Screening
Questionnaire and have a list of trials. What do I do next? |
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Your list of trials matches the information
you entered in the Screening Questionnaire. In order to confirm your
eligibility, you must consult with a medical professional who is directly
involved with the trials that appear in your search results. Click on a trial
title to open up the trial record, which includes a list of medical facilities
where the trial is available. Facilities closest to your zip code will appear
first. Click on the facility name to obtain contact information. Please note
that some trial records contain contact information for physicians and some do
not. You will need to contact the medical facility to obtain a referral to a
physician at that facility. |
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3.7 |
Is there someone I can call
for help? |
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Yes.You can receive telephone assistance Monday - Friday 8:30 AM - 8:00 PM EST
through a collaboration of the Coalition and the American Cancer Society.Cancer
clinical trial specialists at the ACS are trained to help navigate you through
available research studies. Within minutes, you can learn about trials relevant
to your situation and located near your home. Call 1-877-227-8451. |
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4.1 |
How do I enroll patients on
Cooperative Group trials if I am not a member of any group? |
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The National Cancer Institute provides a
service called Cancer Trials Support Unit (CTSU) for the support of a national
network of physicians to participate in NCI-sponsored Phase III cancer
treatment trials. The majority of these trials are sponsored by the adult
Cooperative Clinical Trials Groups. We recommend that you visit the CTSU
website at www.ctsu.org/public. |
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4.2 |
How do I become a member of a
Cooperative Group? |
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If you are interested in becoming a member of
a Cooperative Group, please visit our “About Us” section to find descriptions
and contact information. |
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4.3 |
Can pharmaceutical companies
add clinical trials to your website? |
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It is not necessary. The database already
contains all pharmaceutical and biotechnology trials that are listed in the
U.S. government trial registries. |
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4.4 |
As an individual
investigator, can I add my own trials to your website? |
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The database already includes all
investigator-initiated studies that are registered with the federal government
via the sources described above. This database does not accept
investigator-initiated studies that are not federally registered. |
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4.5 |
Why can't I view protocol
abstracts or eligibility documents? |
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Abstracts and eligibility documents are not
yet available for all protocols in the federal databases. When available, we
provide links to NCI trial summaries. |
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5.1 |
How secure is the information
in the database? |
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The information is stored in a
password-protected database to prevent unauthorized persons from changing or
viewing the data. |
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6.1 |
I found a mistake in my
search results, can I report it? |
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Yes, please. The Coalition relies upon
information entered into the government registries by trial sponsors, and we
want to know when our web site visitors encounter issues with this data. There
are over 9,000 records in the database, and the information changes daily,
making it impossible for us to fact-check every information field in the
database. If you see inaccuracies, please notify us by sending an email to
info@CancerTrialsHelp.org and we will follow up to correct the
information. Include the trial ID number in your email. |
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