From: American Brain Tumor Association <info@...
Sent: Thu, Feb 24, 2011 1:20 pm
Subject: ABTA Tips for Living and Coping (TLC)
The monthly Tips for Living and Coping (TLC) Bulletin offers resources and suggestions to help with the challenges of living with a brain tumor diagnosis. We want to hear from you! Let us know what topics you would like to read about in future TLC columns.
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HOW DO I FIND A CLINICAL TRIAL? ABTA’S TRIALCONNECT™ CAN HELP!
To help patients to quickly and easily access clinical trials for specific brain tumor types, the American Brain Tumor Association has partnered with EmergingMed to offer a free, confidential and personalized service that matches a patient’s brain tumor type and treatment history with an appropriate clinical trial.
To access TrialConnect™ – in English or Spanish - and a list of clinical trials:
Call 1-877-769-4833 to find clinical trials that match you or your family member’s situation and to learn more about brain tumor research. TrialConnect™ specialists are available Monday through Friday from 8:30am to 6:30pm ET.
Complete a profile online. Follow the steps below and click "Find a Match."
What is a Clinical Trial and Where Do I Find One?
When new and experimental brain tumor treatments show promise in the laboratory setting, they are further tested for safety and effectiveness in what are called “clinical trials.” For patients, a clinical trial provides the opportunity to receive a treatment that is otherwise unavailable. Clinical trials also add to science’s overall understanding of brain tumors, and what contributes to optimal diagnostics, treatment and care.
Typically, patients and their families have many questions about clinical trials. They may include:
ARE CLINICAL TRIALS SAFE?
Clinical trials are conducted because it is not known which treatment is the most effective – the standard therapy, or the new therapy. But in order to obtain approval to conduct a trial, there must be scientific data indicating the new treatment may be useful in treating the specified disease. Even phase I trials – the earliest human testing phase – are based on laboratory data showing reason to believe the new treatment has a chance of being effective. The principal investigator of the clinical trial study can share this background data with you – it is also documented in the complete protocol (the written plan for the study). Just ask. There are laws that protect clinical trial participants. In addition, a hospital review board and data monitoring committee oversee each trial. To learn more about clinical trial oversight, and patient rights, visit the National Cancer Institute website.
WILL I RECEIVE MINIMAL STANDARD OF CARE?
All clinical trials MUST provide you with the minimum standard therapy for your particular tumor type. No one in a brain tumor trial can be “untreated.” Also, due to the seriousness of brain tumors, placebos (treatments with no benefits) are rarely used in clinical trials. If placebos are used in the trial, every patient must be informed of this possibility. And, even if a trial were designed to measure the benefit of “watchful waiting,” “waiting” would need to be a standard of care for that circumstance.
CAN I BE FORCED TO PARTICPATE OR REMAIN IN A CLINICAL TRIAL?
In order to participate in a research study, you must sign a written informed consent. The consent confirms that you understand the study, your questions have been answered, and you agree to participate. You cannot be part of a clinical trial without signing a consent. Also, participants in a clinical trial can leave a trial at any time, for any reason. This freedom of choice is stated in the informed consent. The researchers may ask why you are leaving, but that is because the information is important. There may be very good reasons why people leave a trial, and that can only be learned by honest feedback. If you leave a trial, you have the right to decline continued treatment, to receive standard therapy, or to ask about other clinical trials.
HOW DO I KNOW IF I QUALIFY FOR, OR IF ITS A GOOD TIME TO PARTICIPATE IN, A CLINICAL TRIAL?
Each trial has a written set of eligibility requirements. This helps ensure that each of you entering the trial are the “same” and did not receive a therapy with the potential to impact the new treatment. Trials are usually open to those with newly diagnosed tumors, or those whose tumors were treated and are now growing again. In addition, there are guidelines for blood test results, general medical health, tumor size and type, as well other treatment that may conflict with this new treatment. There are many different clinical trials, each with its own set of eligibility criteria. There may be something appropriate for your specific situation even if you have received other therapy.
IS A CLINICAL TRIAL RIGHT FOR ME?
As always, talk with your doctor before considering a clinical trial and other treatments. No one knows you, and your tumor, better than your own physician. Your health care team can help you look at your treatment options, and compare risks and benefits of a clinical trial.
THE AMERICAN BRAIN TUMOR ASSOCIATION....WE'RE HERE TO HELP!
To learn more about the resources we offer, please contact an ABTA social worker at 800-886-2282, or send us an e-mail at socialwork@...
. Please also take a moment to visit our ABTA Care and Support Web page.
The American Brain Tumor Association funds brain tumor research and offers services to patients and family members in the U.S. and throughout the world. Learn more about supporting ABTA and its mission, visit www.abta.org or donate at http://www.abta.org/Donate/54.
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© American Brain Tumor Association All Rights Reserved.
GBYAY Anne McGinnis Breen
See my ponytail bouncing and my smiley face winking at you? &;>)
Please scroll all the way down to my first two blog entries for my list of 28 questions to ask your medical team about brain tumor treatments plus my personal meningioma alternative drug therapy RU486 Mifepristone and my new blog comments about the obsolete 1990s EPA radiation risk calculations for women and children are found at http://gbyay.blogspot.com
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Keep you faith, cherish your reason, treasure your mind and hold to your own good purpose...be not afraid!
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