What exactly is a registry, anyway?

The Cancer Experience Registry serves a vital role in helping researchers better understand the cancer journey, but what exactly is the Cancer Experience Registry?

Generally, a medical registry is a system for collecting, organizing and analyzing the experiences of individuals who have a certain disease, a condition that predisposes them to a health-related issue or prior exposure to substances that have been shown to cause an adverse health effect. Registries can be helpful in a number of ways by providing information such as the magnitude of the issue at hand, the incidence of a certain disease, the trends a certain disease faces over time or an assessment of the services available for individuals with the disease or condition. All of this information allows researchers to compile, analyze, and report the real experiences of individuals living with a certain disease or condition.

The Cancer Experience Registry, an initiative started by the Cancer Support Community, seeks to collect information about the emotional and social effects of living with a cancer diagnosis. Although other cancer registries exist, CSC’s Cancer Experience Registry is the first to focus on the self-reported emotional and social effects of a cancer diagnosis. In this regard, it meets a need that has been overlooked in the past and provides valuable insight into how individuals diagnosed with cancer can be treated and supported more effectively.

The Cancer Experience Registry seeks to address these issues through its three main goals, which are:

  1. To support greater understanding of the social and emotional needs of people who have been impacted by cancer
  2. To raise awareness among the research community, health care providers, patient advocates and policy makers around gaps in care and the social and emotional challenges of people affected by cancer
  3. To develop programs and services that will address the emotional and social needs and ultimately improve the long-term quality of life of people impacted by cancer

Since its inception, participation in the Cancer Experience Registry has been consistently growing, with more than 6,000 members to date. The survey is done completely online and usually takes between 20 to 45 minutes. Anyone who has been diagnosed with cancer at any point in their lives is eligible to participate in the on-going research.

The information gained from the registry will continue to allow many advances in the area of cancer support. For example, the Cancer Support Community developed Open to Options, a program that helps individuals diagnosed with cancer prepare for appointments in which they are making a treatment decision, with information gained from the registry in mind. Early findings from the registry also influenced the development of CancerSupportSource, the first web-based comprehensive distress screening program for community-based hospital, physician practices and advocacy organizations to streamline everything from screening to referral to follow-up care through one program. Further, registry data has set the stage for many health care providers to improve how they communicate with their patients and how to better address emotional and social issues that have previously not been the focus of care.

If you or someone you know is interested in participating in the Cancer Experience Registry, or if you want more information about the registry, click here.


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