The Cancer Registry Rationale

Joining cancer registries can help patients and the larger oncology community.
BY BARBARA SADICK
PUBLISHED: OCTOBER 23, 2016
For IDE MILLS, joining a patient registry was not just about helping researchers gather data, but about feeling like part of a community. - PHOTO BY DIANA LEE
For IDE MILLS, joining a patient registry was not just about helping researchers gather data, but about feeling like part of a community. - PHOTO BY DIANA LEE
When Ide Mills first learned about the Cancer Support Community Registry, she jumped at the chance to participate. Mills, who has stage 4 lung cancer, went online at cancerexperienceregistry.org to answer demographic questions and in-depth queries about her experience with her illness, such as what worried her the most and what her everyday challenges were in living with her disease.

The registry collects information about the social and emotional experiences of cancer patients and their caregivers. Then, Cancer Support Community, a nonprofit patient advocacy group, uses the data to improve its own programs and to help enhance research and care programs offered by the health care community.

For Mills, of Maplewood, New Jersey, filling out the online form represented a chance to help someone else have a better cancer journey, but since then, the registry has come to mean even more to her. Mills not only participates actively in the registry, but is an advisor on one of its panels. She and other members of this community contribute to the study of trends, share their thoughts about research findings and help design programs that meet the needs of patients and caregivers.

“It’s important for patients to know they are not alone, and cathartic to share one’s story,” Mills says. “Most important, being a part of a larger community bonded by similar life experiences is invaluable.”

Registries are designed for the collection of data, but, unlike clinical trials, they are not designed to test drugs under controlled conditions; rather, registries look at established standards of care and choices made by patients and their doctors during the normal course of treatment. This means that registries answer different questions than clinical trials do. While a trial estimates the safety and/or effectiveness of a treatment, a registry determines whether a new treatment is being appropriately used in a population group and whether the benefits found in clinical trials are consistent with what is being observed in a more diverse population. In some cases, information is collected about a specific disease or clinical situation, rather than a specific therapy. Registries can also look for trends in cancer incidence that might be addressable through changes in health care practices.



Talk about this article with other patients, caregivers, and advocates in the General Discussions CURE discussion group.
x-button
 
CURE wants to hear from you! We are inviting you to Share Your Story with the readers of CURE. Submit your personal experience with cancer by visiting Share Your Story
 
Not yet receiving CURE in your mailbox? Sign up to receive CURE Magazine by visiting GetCureNow.com
x
//For side ad protocol