Registries

“There is a lot of cancer in my family, but my genetic testing was negative. It’s a reassuring feeling but also frustrating, since we don’t have an answer.”

“I tested positive for the gene mutation running in my family, although I’ve never been diagnosed with cancer. I wish there was some way for me to contribute to new developments in early detection or even cancer prevention.”

“I have heard that genetic testing improves over time and new genes are being discovered…how can I know when there is additional testing available that might be beneficial to me and my family?”

Do any of those statements sound familiar to you? Many people who have cancer in their family wonder how it is being caused and how it might impact their own health and screening as well as for their family members and children. They might also want to keep in touch with new developments in cancer genetics and treatment, topics that are in the general media and health community with increasing frequency.

What are Registries?

Registries are one way to achieve this by keeping families with cancer in touch and by collecting information to better understand cancer development, ultimately to improve care for those at risk.

There are two main types of registries: population-based and clinic-based. Population-based registries collect information across a larger range of patients and are usually operated by state governments or other public organizations. Clinic-based registries typically obtain patient information from high-risk clinics, and therefore attract patients who are more likely to be at risk for hereditary cancer or have an identified gene mutation in their family.

Registries are usually free to join and in most cases involve filling out a detailed questionnaire, although sometimes blood and/or tumor tissue samples may be requested. They are able to link participants with ongoing research studies to investigate cancer prevention and treatment, and keep individuals up-to-date on newly available information in the field of cancer genetics. Researchers working with registries hope that this gathered information will lead to improved personalized risk assessment, testing, screening and treatment for cancer.

There are now more registries focusing on minority populations, which are traditionally under-represented in research studies for cancer. Registries are able to notify individuals if they are eligible for certain research studies based on their medical or family history of cancer, or if new therapies or genetic tests come available that might be applicable to them. This information will be helpful not only to those who have a personal or family history of cancer, but also to the general population

Registries Support Research

Already, several registries have used such information to learn more about how genes and environment lead to cancer. Some registries are closely tied with research studies that are looking at characteristics of certain cancers in individuals who carry a gene mutation for hereditary cancer. This includes families with hereditary breast and ovarian cancer and hereditary colon cancer.

The goal is to eventually develop new therapies and screening measures that are specific to those cancers. For example, research has recently found that individuals diagnosed with colon cancer that demonstrates DNA mismatch repair are less likely to respond to a standard chemotherapy called 5-fluorouracil (5-FU). This is likely to impact the treatment for colon cancer patients who have Lynch syndrome, which is a hereditary cancer syndrome caused by a mutation in a DNA mismatch repair gene.

For women with breast or ovarian cancer who carry a BRCA1 or BRCA2 gene mutation, research is ongoing to determine whether PARP inhibitors are a more effective treatment for these types of cancers.

Registries Important to Communication for Patients and Families

Now more than ever, family members are becoming more open with one another and sharing information about their health including cancer and genetic testing. This is especially true as we are learning more about cancer and developing interventions and preventative measures for cancer.

Registries are an important tool in this effort, as well as a great resource for communicating information to families from the cancer research world.

Interested in learning more about a specific registry?

NCI Registry Resource
Family Cancer Genetics Network
Facing Our Risk, of Cancer Empowered resource for registries and ongoing research pertaining to breast and ovarian cancer
Collaborative Group of the Americas on Inherited Colorectal Cancer: Find a registry