Cancer Support Community Offers Patients a Resource to Share, Be Heard, and Give Back
The Cancer Support Community has a special resource for patients with every type of cancer to share their thoughts and concerns with others who are sharing similar experiences.
The Cancer Experience Registry is Open to Patients with Every Cancer Type.
The Cancer Support Community has a special resource for patients with every type of cancer to share their thoughts and concerns with others who are sharing similar experiences. The Cancer Experience Registry, launched in March 2013 through the Cancer Support Community’s Research and Training Institute, is a research study and an online resource portal for people living with cancer to weigh in on the issues they are confronting, listen to what others have to say and give back to the larger cancer community.
“We know that cancer patients at every stage of their journey have many concerns, and that people can feel isolated or alone,” said Joanne Buzaglo, Vice President of Research and Training at the Cancer Support Community, and a two time cancer survivor. “Our Cancer Experience Registry provides patients with an opportunity to have their voices heard—and also to ‘pay it forward’ in a sense, to share what they have learned from their experience with other people who facing these same kinds of issues.”
To date, over 6,300 people have joined the registry. Anyone who has been diagnosed with cancer at any time can sign up, filling out a detailed survey to help identify the most important social and emotional challenges they have faced during the cancer journey. This information helps the Cancer Experience Registry connect people to help or advice on a specific issue. The data from this project is being used to develop new programs, educational tools, policy initiatives and research initiatives aimed at improving the quality of care and outcomes for everyone impacted by cancer.
“The Cancer Experience Registry connects patients who are going through active treatment and those who are survivors in a way that allows us to make a difference in our own lives while we are helping others at the same time. By collecting and sharing this information, we are also identifying the gaps that exist today, not just in cancer care, but also in communication,” said Kay Johnson, a chronic myeloid leukemia survivor and national advisor to the Cancer Experience Registry.
As the registry grows, the Cancer Support Community plans to add new programs for patients who share specific cancer diagnoses or concerns. The Cancer Experience Registry also produces a monthly newsletter for all registrants that addresses a full range of topics—from side effects, to financial worries to diet and nutrition—and provides updates on the data from registry participants and allows readers to submit and respond to questions.
“The Cancer Experience Registry is a very rich and important resource for cancer patients, but what makes it so special is that the insights we are gaining from the registry come directly from the people who are living with cancer and help us identify and deepen our understanding of the often over-looked needs of cancer patients.” said Kim Thiboldeaux, President and CEO of the Cancer Support Community.
Anyone who has ever had a diagnosis of cancer can participate in the Cancer Experience Registry. To learn more or join, visit www.CancerExperienceRegistry.org.
The Cancer Support Community is an international nonprofit organization whose mission is to ensure that all people impacted with cancer are empowered by knowledge, strengthened by action and sustained by community.
