1. “Caregivers are often the ones who do the
most information seeking, or who act as the
eyes and ears for the person going through
cancer. At the same time, their lives are
changing and they have their own issues.”
Adam, Caregiver
Welcome to
The Cancer
Experience Registry
A Community of People
Impacted by Cancer
Make Your Voice Heard
Give Your Experience Power
“We want our voices to be heard, not just by
other patients, but also by our health care
teams. The rise of the engaged and informed
patient is a major driver for significant change
occurring in the health care system—the move
to a more patient-centered and patient driven
system of care.”
Gwen Darien, Executive Vice President,
Cancer Support Community
“As we deal with more patients who are living
longer, we have to take the time and room to
ask them about the issues that are affecting how
they live, what is important to them, their goals.”
Patricia Robinson, MD,
Cancer Experience Registry Advisor
To join the Cancer Experience Registry, visit
www.CancerExperienceRegistry.org
To learn more about the
Cancer Support Community, visit
www.CancerSupportCommunity.org
The Cancer
Support Community
The mission of the Cancer Support Community is to
ensure that all people impacted by cancer are empowered
by knowledge, strengthened by action and sustained by
community. Backed by evidence that the best cancer
care includes social and emotional support, the Cancer
Support Community provides all of its services and
programs free of charge to people diagnosed with cancer
and caregivers.
Specific Registries
As the Cancer Experience Registry has evolved, we have
realized that people with specific types of cancer often
have concerns or issues that relate directly to their unique
experience. To meet that need, we have launched a number
of registries specific to various cancer types. You can find
out if there is a registry for your type of cancer when you
register. Our list is growing and currently includes: breast
cancer, chronic lymphocytic leukemia, chronic myeloid
leukemia, lung cancer, melanoma, metastatic breast cancer,
multiple myeloma, prostate cancer, stomach/gastric cancer,
and one especially for caregivers.

2. What is the Cancer
Experience Registry?
The Cancer Experience Registry is a unique online
community for people impacted by cancer. By joining the
Registry, you can:
• Share your story
• Identify issues that are important to you
• Connect with and help other people
• Get updates and information on cancer research and
treatment
• Improve care for people with cancer everywhere
Who can join?
The Cancer Experience Registry is open to anyone who
has been diagnosed with cancer, at any stage of their
journey. It is also open to caregivers of people with cancer.
How does the Cancer
Experience Registry work?
The Registry isn’t just a survey. It’s a community and a
resource that allows for a better understanding of the
social and emotional needs of patients, families and
caregivers throughout the cancer journey. Joining is
simple, free and completely confidential.
• Explore the Cancer Experience Registry website
at www.CancerExperienceRegistry.org. Get
to know the community, see what resources are
available and gain some understanding of how the
information you provide is used to help improve
cancer care.
• Register. It just takes three simple steps. You will
agree to informed consent, submit your email and
select a primary cancer diagnosis or caregiver
status, and complete your profile.
• Fill out the in-depth survey. This is the heart and
soul of the Registry. It is your opportunity to share
your experience and identify key cancer-related
issues impacting your life. The survey includes open-
ended questions on a range of topics.
• Be part of the community. Once you join the
Registry, you can set up your personalized page.
This allows you to get updates, news and connect
with people who share your experience. We will also
report on data and results from the Registry.
Why should you participate?
There are many reasons to join the Cancer Experience
Registry. You can get support, and you can give it. You
can connect with and learn from people who share your
experience, and provide others with the opportunity to
benefit from your own.
• Every person impacted by cancer has a unique and
powerful story. The Cancer Experience Registry is a
forum for sharing those stories.
• Each story has its own power, but together these
stories, and voices, become a powerful force for
change. The information you provide is shared
with the cancer community to help gain support for
better care and more research. It also helps improve
programs and services for the cancer community.
• You are the expert in your own care, and on the issues
that affect your life. The Cancer Experience Registry
puts you at the center of the conversation and gives
meaning to the concept of patient-centered care.
• For many people, healing comes from connecting with
others. The Cancer Experience Registry is a special
place for making those connections happen.
• You can get information that is customized for your
type of cancer, and for the issues that impact your life.
TOP CONCERNS SHARED BY
REGISTRY PARTICIPANTS
• Eating and nutrition
• Worry about the future
• Health insurance and money matters
• Feeling too tired to do normal activities
• Exercising and being physically active
“I signed up for the Cancer Experience Registry
to give back to people going through what
I went through. I want to participate in the
opportunity to support and talk to other people.”
Linda, Registry Participant
“You live your life through advocating positively
for yourself and others. The more I become
involved with the cancer community, the more
inspired I am to do more.”
Gloria, Registry Participant
KEY ISSUES DISCUSSED IN
CANCER EXPERIENCE REGISTRY
• Financial impact of cancer
• Dealing with side effects, including long term
consequences
• Access to clinical trials
• Challenges related to sexuality, body image and fertility