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Cancer Experience Registry

Posted 5/21/2013

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  It is such a pleasure to write this morning about the Cancer Experience Registry, a program of the Cancer Support Community. The Cancer Support Community (www.cancersupportcommunity.org) is the name of the merged Wellness Community and Gilda's Club, and provides a multitude of support and educational services to cancer patients and their families at their many affiliates around the country. The Registry has been developed by their Research and Training Institute to identify and advance the understanding of the emotional and social needs of people who have been diagnosed with all kinds of cancer.

  It is estimated that there will be nearly 1.7 million new cases of cancer diagnosed in the US this year and that there are more than 13.6 million cancer survivors. These numbers make clear the urgent need to better recognize and understand the issues cancer patients and survivors face throughout their experience. The Registry has three main goals: to support greater understanding of the social and emotional needs of people who have been impacted by cancer; to raise awareness among the research community; and to develop programs and services that will address these needs and, hopefully, improve the long-term quality of life of cancer survivors.

  . This is from their press release about the project. Please do click on the link and take a little time (the estimate is 20-30 minutes) to thoughtfully complete the survey. It likely will be interesting for you, and you will be contributing to the greater good and the growing body of knowledge about cancer survivorship.

Cancer is more than just treating the tumor -- there are often emotional and social challenges to overcome as well.  The Cancer Support Community (CSC), an organization providing high-quality emotional and social support through a network of more than 50 local affiliates, more than 100 satellite locations and online, has launched a nationwide registry that will help the cancer community better understand the social and emotional needs of people living with a diagnosis of cancer. Called the Cancer Experience Registry (CER), this first-in-its-kind initiative will collect the experiences of people who have volunteered to share their cancer journey by answering a series of questions online and will connect them to a network of support and resources. Anyone who has ever faced a cancer diagnosis -- whether just diagnosed, in treatment or years beyond treatment -- is invited and encouraged to join the registry by visiting www.CancerExperienceRegistry.org. The CER consists of questions that measure the social, emotional, spiritual and financial impact of cancer. After completing the questionnaire, individuals will be able to compare their responses with others in the community. Information shared through the Cancer Experience Registry will remain anonymous and will be used to identify gaps in care, help develop innovative programming, and inform next steps in research and policy.  The findings will be published in an Annual Index and will be available to the cancer community at large and to all people who take part in the Cancer Experience Registry.

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