Move Forward Together

ACT (About Clinical Trials) empowers people to understand cancer clinical trials and discuss this option with their doctors and loved ones. This unique resource features unscripted interviews with clinical trial participants, doctors, patient rights advocates, and others. Their honest stories and the information on this site will help you ACT toward having educated discussions with those committed to your care.ACT (About Clinical Trials) empowers people to understand cancer clinical trials and discuss this treatment option with their doctors and loved ones.

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Cancer clinical trials are an important option

Clinical trials offer a chance to receive investigational medicines or procedures that experts think might improve the treatment of cancer. This important option is not limited to people who have run out of choices. In fact, there may be clinical trials for every stage of disease in dozens of cancer types. In this video, patients and doctors share their perspectives on why joining a clinical trial may be an option worth considering.

Why consider a clinical trial?

Why Should I Consider a Cancer Clinical Trial?


“To have the opportunity to go on a clinical trial for a patient is extremely exciting.” —Sandra Swain, MD; oncologist


  • ACT addresses concerns just like yours

    FIND OUT MORE

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  • CONCERN

    I don’t want to be a guinea pig for an experimental treatment

    THE TRUTH

    Cancer clinical trials are developed with high medical and ethical standards, and participants are treated with care and with respect for their rights.

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  • CONCERN

    I’m afraid I might receive a sugar pill or no treatment at all

    THE TRUTH

    Cancer clinical trials rarely use placebo alone if an effective treatment is available; doing so is unethical.

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  • CONCERN

    Cancer clinical trials are only for people with no other treatment options

    THE TRUTH

    Trials can study everything from prevention to early- and late-stage treatment, and they may be an option at any point after your diagnosis.

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  • CONCERN

    I’m worried that I won’t receive quality care in a cancer clinical trial

    THE TRUTH

    Many procedures are in place to help you receive quality care in a cancer clinical trial.

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  • CONCERN

    People might access private information about me if I participate

    THE TRUTH

    In nearly all cancer clinical trials, patients are identified by codes so that their privacy is protected throughout and after the study.

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  • CONCERN

    I’m afraid that my health insurance will not help with the costs of a cancer clinical trial

    THE TRUTH

    Many costs are covered by insurance companies and the study sponsor, and financial support is often available to help with other expenses; talk to your doctor to understand what costs you could be responsible for.

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  • CONCERN

    Informed consent only protects researchers and doctors, not patients

    THE TRUTH

    Informed consent is a full explanation of the trial that includes a statement that the study involves research and is voluntary, and explanations of the possible risks, the possible benefits, how your medical information may be used, and more. Informed consent does not require you to give up your right to protection if the medical team is negligent or does something wrong.

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  • CONCERN

    I’m afraid that once I join a cancer clinical trial, there’s no way out

    THE TRUTH

    You have the right to refuse treatment in a cancer clinical trial or to stop treatment at any time without penalty.

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There are many factors to keep in mind when considering a cancer clinical trial

As with any important decision, it’s a good idea to think about the risks and benefits of joining a cancer clinical trial. This video encourages you to ask your medical team about all of your treatment options, including cancer clinical trials. Trial participants, doctors, and patient advocates explain the factors you’ll want to keep in mind as you consider your treatment plan.

How to know if it's right for you

How Will I Know if a Trial is Right for Me?


“I’ve always advised patients...when the circumstances weren’t urgent, to take time to understand their disease and to evaluate the alternatives.”
—Sandra Horning, MD; oncologist and chief medical officer


Asking the right questions keeps you involved in your care

A cancer diagnosis is often overwhelming, and it’s sometimes hard to gather your thoughts and know the right questions to ask. This video talks you through some of the questions it will be helpful to ask about your cancer, your treatment options, your doctor, and about whether participating in a cancer clinical trial is right for you.

What to ask your doctor

HOW SHOULD I PREPARE FOR DISCUSSIONS WITH MY DOCTOR?


“Talk to your doctor and say, ‘Tell me my full options.’ Raise questions. Be a pain in the neck. That’s what the doctor is there for.” —Arthur Caplan, PhD; medical ethicist


  • How to start a conversation about clinical trials How to start a conversation about clinical trials How to start a conversation about clinical trials

    FIND OUT IF A CLINICAL TRIAL IS RIGHT FOR YOU

    LEARN MORE

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  • How to start a conversation about clinical trials How to start a conversation about clinical trials How to start a conversation about clinical trials

    1. GET SPECIFIC

    ABOUT THE DETAILS OF YOUR CANCER

    • Type of cancer
    • Stage
    • How it's treated
    • Prognosis

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  • How to start a conversation about clinical trials How to start a conversation about clinical trials How to start a conversation about clinical trials

    2. GET GUIDANCE

    ABOUT YOUR OPTIONS

    • What the standard of care is today
    • Doctor’s recommended treatment
    • Treatment risks and benefits
    • Treatment goals
    • Which clinical trials are available for your cancer

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  • How to start a conversation about clinical trials How to start a conversation about clinical trials How to start a conversation about clinical trials

    3. GET INFORMED

    ABOUT CANCER
    CLINICAL TRIALS

    • Research available clinical trial options
    • Understand the goals of the available trials
    • Determine if a trial is appropriate for you
    • Seek a second opinion if necessary
    • Research available clinical trial options
    • Understand the goals of the available trials
    • Determine if a trial is appropriate for you
    • Talk with loved ones about your options and concerns
    • Ask about the study location, costs, and time commitments
    • Find support services online and through your doctors
    • Seek a second opinion if necessary
    • Talk with loved ones about your options and concerns
    • Ask about the study location, costs, and time commitments
    • Find support services online and through your doctors

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RULES AND PROCEDURES ARE IN PLACE SO THAT YOU WILL RECEIVE HIGH-QUALITY CARE

Before a single patient can join a trial, many different experts must approve every detail of the study—from why it’s being done to how often patients should be monitored. Once the trial begins, more unbiased experts provide oversight to check that the rules of the trial are being followed and patients’ rights are protected. This video features doctors and patient rights advocates explaining the high standards by which trials are developed and run.

How trial participants are protected

What Standards Are in Place to
Safeguard Trial Participants?


“I explain...that when they're on a clinical trial, they're going to be followed very closely by...specific guidelines.”
—Daniel P. McKellar, MD; surgeon and Commission on Cancer chairman


Informed consent describes the study process, potential risks and benefits, and your rights as a participant

If you are eligible and decide to join a trial, you will be required to review and sign the informed consent forms. This can be an overwhelming process, but it is how you will learn all the details of the trial, including the potential benefits and the possible risks, and give your permission to be treated. This video features patients, doctors, and patient rights advocates who offer tips and insights to help you navigate the process of informed consent.

What is informed consent?

What Is Informed Consent?


“When I received the stack of papers...it made me realize this is really serious. But then...it was actually a good feeling to know that this was not something that was being done lightly.” —Rose Gerber; trial participant


Information and support are close at hand

Because so many people have been affected by cancer, there are many reliable and helpful resources to help you through your cancer journey. In this video, trial participants and doctors help you find the people and resources that may be helpful in educating you about cancer clinical trials.

Resources and support

Where Can I Turn for Information and Support?


“The first thing is to hold on tight and be optimistic and to get very engaged and educated about your cancer.”
—Jack Whelan; trial participant


Reliable resources to help along the way


First, talk to your doctor

Your healthcare team is the best source for information about your treatment options, including cancer clinical trials. There are many questions you’ll want to ask your healthcare team when you’re ready to discuss treatment options. Print this helpful Discussion Guide and bring it to your next appointment so that you don’t forget anything important. Record your answers on the form and keep it handy for future reference.

Discussion Guide


Where to find information about cancer clinical trials

These clinical trial resources will help you find trials that might be right for you.


Support services

These trustworthy sources provide assistance with trial-related costs, which may not always be covered by insurance.

Practical support

Financial support

Additional nationwide support organizations


Don’t go it alone

There are millions of people just like you who are ready to ACT against cancer. These organizations provide advocacy, information, awareness, fundraising opportunities, and a community of like-minded people touched by cancer.




Video participants

Thank you to those who volunteered their time to participate in the ACT video series.


Otis Brawley, MD, FACP
Oncologist and Chief Medical Officer, American Cancer Society
Dr Brawley is the chief medical officer for the American Cancer Society. He is responsible for promoting the goals of cancer prevention, early detection, and quality treatment through cancer research and education. Dr Brawley has worked with the National Cancer Institute and the Food and Drug Administration, and has been recognized as one of America’s top doctors for cancer.

Arthur Caplan, PhD
Medical Ethicist, NYU
Dr Caplan is a professor and the founding director of the Division of Medical Ethics at New York University’s Langone Medical Center. As a bioethicist, Dr Caplan studies the moral and ethical issues related to advances in biology and medicine, as well as cancer clinical trials. He writes a regular column on bioethics for NBC.com and frequently contributes to WebMD/Medscape.

Constance Dennis-Bragg and Shelley Snider
Study Participant and Caregiver
Ms Dennis-Bragg is a retired registered nurse with 40 years of experience in critical care, 10 of which she spent working as a flight nurse. After being diagnosed with breast cancer in 2013, Ms Dennis-Bragg entered a cancer clinical trial, which continues to collect information every six months. She is the family matriarch, beloved by her daughters, four grandchildren, and two great-grandchildren. Shelley, her youngest daughter, is Ms Dennis-Bragg’s steadfast caregiver.

Rose and Robert Gerber
Study Participant and Caregiver
Ms Gerber is a nationally recognized cancer advocate and survivor. As the director of communications and patient advocacy at Community Oncology Alliance, she has spoken about cancer care on national television and has met with legislators in Washington, DC, on cancer policy issues. Ms Gerber was diagnosed with breast cancer in 2003 and participated in a cancer clinical trial from 2003 to 2004. With continued support from her caregiver and devoted husband Robert, she enjoys being an active mother of two.

Sandra Horning, MD
Oncologist and Genentech Chief Medical Officer
Dr Horning is a medical oncologist and the chief medical officer and global head of product development at Roche Genentech. A cancer survivor and caregiver herself, Dr Horning understands what it is to receive a cancer diagnosis; one of her primary goals as president of the American Society of Clinical Oncologists (ASCO) from 2005 to 2006 was to ensure survivors continued to receive care and attention beyond their initial treatment.

Susan Love, MD
Surgeon and Research Advocate
Dr Love, a breast surgeon, is the Chief Visionary Officer of the Dr. Susan Love Research Foundation, a nonprofit organization dedicated to the eradication of breast cancer. She is also author of the Dr. Susan Love Breast Book, a patient advocate, and an acute myeloid leukemia survivor. Dr Love was appointed by President Clinton to the National Cancer Advisory Board in 1998.

Dan McKellar, MD, FACS
Surgeon and Commission on Cancer Chair
Dr McKellar is a surgeon and director of the cancer program at Wayne HealthCare in Dayton, Ohio. Throughout his career, Dr McKellar's primary focus has been to improve the quality of care for cancer patients. He currently serves as the chair of the Commission on Cancer, helping to develop standards for cancer programs including the requirement that patients in Commission on Cancer–accredited facilities have access to cancer clinical trials.

Joanna Morales, Esq
Cancer Rights Attorney
Ms Morales is a cancer rights attorney, author, speaker, and the CEO of Triage Cancer, a national nonprofit organization connecting people to cancer survivorship information and resources through educational events, a national speakers bureau, and online tools. Ms Morales has spent more than 20 years working on behalf of individuals with cancer, including five years teaching a seminar in cancer rights law.

Sandra M. Swain, MD, FACP
Breast Oncologist and Cancer Institute Medical Director
Dr Swain is the medical director of the Washington Cancer Institute at MedStar Washington Hospital Center in Washington, DC, and is a professor of medicine at Georgetown University. She has published over 250 articles and is recognized as a leading international figure in breast cancer. Dr Swain was president of ASCO from 2012 to 2013.

Jack and Jan Whelan
Study Participant and Caregiver
Diagnosed in 2006, Mr Whelan is a survivor of a rare blood cancer, a lymphoplasmacytic lymphoma called Waldenstrom macroglobulinemia. He has participated in seven cancer clinical trials. He is determined to achieve periods of progression-free survival while he helps in the research, care, and ultimately, the cure of this rare cancer. Mr Whelan has three daughters and six grandchildren whom he loves and entertains with Jan, his dedicated wife and trusted caregiver.