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FAQs

Frequently Asked Questions
1. General Information
1.1 Who can use your trial searching features?
1.2 I am not comfortable using the database. Is there another way to get help?
1.3 Is there a cost for using your services?
2. Contents
2.1 Which clinical trials are included in your database?
2.2 Are there different types of clinical trials for cancer?
2.3 Where do you get the information in your database?
2.4 Is Cooperative Group trial information different from trials by other sponsors?
2.5 Why is location information different for Cooperative Group trials?
2.6 Are Cooperative Group trials presented differently than trials by other sponsors?
2.7 How often is the information in the database updated?
2.8 How accurate is the information?
2.9 How can I view attachments?
3. Patients and Caregivers
3.1 I am a patient. Can this website tell me if I am eligible to join a cancer clinical trial?
3.2 What does it mean to be eligible for a cancer clinical trial?
3.3 Can I enroll myself onto a cancer clinical trial using your website?
3.4 I want to search for clinical trials. Where do I start?
3.5 I am looking for a referral to a cancer specialist. Where do I start?
3.6 I completed the Screening Questionnaire and have a list of trials. What do I do next?
3.7 Is there someone I can call for help?
4. Professionals
4.1 How do I enroll patients on Cooperative Group trials if I am not a member of any group?
4.2 How do I become a member of a Cooperative Group?
4.3 Can pharmaceutical companies add clinical trials to your website?
4.4 As an individual investigator, can I add my own trials to your website?
4.5 Why can't I view protocol abstracts or eligibility documents?
5. Security
5.1 How secure is the information in the database?
6. Other
6.1 I found a mistake in my search results, can I report it?


Answers to Frequently Asked Questions
1. General Information
1.1 Who can use your trial searching features?
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?
Yes. Call 1-800-227-2345 .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?
No. The services provided by the Coalition and its collaborators are free to all users.

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2. Contents
2.1 Which clinical trials are included in your database?
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?
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?
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?
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?
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?
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?
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?
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?
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. Patients and Caregivers
3.1 I am a patient. Can this website tell me if I am eligible to join a cancer clinical trial?
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?
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?
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?
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?
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?
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?
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 1-800-227-2345.

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4. Professionals
4.1 How do I enroll patients on Cooperative Group trials if I am not a member of any group?
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?
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?
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?
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?
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. Security
5.1 How secure is the information in the database?
The information is stored in a password-protected database to prevent unauthorized persons from changing or viewing the data.

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6. Others
6.1 I found a mistake in my search results, can I report it?
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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