| calgb.org > CALGB Advocacy |
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| Patient Advocates in Cancer Research |
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| What is a Patient Advocate in CALGB? |
Included in the membership of the disease and modality committees of the Cancer and Leukemia Group B (CALGB) are a dedicated group of Patient Advocates. They are survivors and family members who represent patient experiences, review trial feasibility for participants, and question issues related to patient needs. Patient advocates in research believe in the value of the clinical trial system and work to improve patient education and understanding, to improve clinical trail protocols and enhance accrual into trials.
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| What is the role of Patient Advocate in CALGB? |
The role of Patient Advocates in CALGB is to represent the perspective of patients and their families in the development and delivery of clinical trials. The goal is to team with health care professionals to advance outstanding research in the treatment, care and prevention of cancer.
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| How does someone become a Patient Advocate? |
Patient Advocates receive training from the Coalition of National Cancer Cooperative Groups that is designed to give them specific information to enhance their ability to participate in a cooperative group. Included in their training is information about the cooperative group system, cancer clinical trials, drug development, surgical and radiation therapies, protection of research participants and tissue research. Additionally, they call upon their own unique experience as a cancer patient or family member. They are not financially reimbursed for their services and are often nominated by the chairs of the committees on which they will serve.
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| In what other activities do Patient Advocates in research participate? |
There are between 500 and 600 advocates currently working in research advocacy, including 200 in the National Cancer Institute's CARRA program and 100 in Cooperative Groups. The Food and Drug Administration has 15 patient consultants and the Department of Defense, 25 advocate reviewers. There are more than 5, 500 registered Institutional Review Boards in the US and each is required to have a non-scientific or community member (but very few of them are patient advocates).
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| About Clinical Trials |
| What are cancer clinical trials and why are they important? |
Clinical trials are research studies with people. They are designed for all kinds of diseases including cancer. Clinical trials look at cancer therapies in organized, detailed ways. They exist because people get sick, we do not know which treatment is better and we need better ways to diagnose, treat and prevent cancer. Clinical trials are the only way to find out what new approaches to prevention, screening, treatment and survival work better than existing ones.
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| How do people access information about clinical trials? |
A primary source for information about clinical trials is Internet websites. We suggest that you begin with the sites noted below but also strongly suggest that before you access other sites you read the National Cancer Institutes posting on “Questions to ask about a clinical trial website.” There are many Web sites that exist to help you locate clinical trials. This document suggests questions that you should ask of such sites so that you understand the possible biases and limitations that influence the information and services provided. Information about clinical trials may be accessed by phone at 1-800-4 CANCER.
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