News Archive - 2012
GASTRIC CANCER REGISTRY UPDATE
The Gastric Cancer Registry had its first birthday on April 13, and we're pleased to report that it has made great progress so far. The registry—which combines an online questionnaire with genomic data from tissue and blood samples—launched last year, and so far, 81 people have participated in one form or another. Meredith Mills of the Stanford School of Medicine, which is collecting and storing the data, says the initial goal was to attract 1,000 people to the registry over ten years. So nearly 100 in the first year put the project right on track. And it's encouraging to know that with 81 participants, we can already begin to look at some trends and start conducting basic research tests.
The Gastric Cancer Registry is a secure, HIPAA-compliant database that collects and stores data on the epidemiology of a person's disease (histology, stage and grade of tumor, treatment and surgery, family history), and a quality-of-life questionnaire. Participants are asked to complete the quality-of-life survey every six months, and several have complied, Mills says.
Stanford research assistant Liz Schackmann has spent quite a bit of time on the phone assisting registry participants who have left parts of the questionnaire incomplete. "Some people get nervous when they see they need something medical," Schackmann explains. "I call them to make sure they understand they don't need to say exactly what the pathology was. One patient called because she was elderly and had no Internet access. I entered her answers in the system for her."
Over time, Stanford's research staff will contact all the registry participants to request blood donations, as well as samples from any surgeries the patients underwent. The ultimate goal is to use next-generation DNA sequencing to scrutinize the genetic makeup of gastric cancer and map out the associations between specific genetic mutations and patients' prognoses.
Most patients are learning about the registry from the GCF website, the Stanford Cancer Center website, and Facebook. "People come to it from an Internet search and bring it to their physicians," Schackmann says. "It probably will continue to spread through word of mouth."
Stanford researcher Dr. Jim Ford, who helped create the registry, recently met with GI oncologists at the school and received an enthusiastic response, Mills says. Mercy Cancer Center in Sacramento has also been referring patients to the registry. "We're planning to send letters to local oncologists to make them aware of the registry," she says. Special business cards promoting the registry were recently produced and will be included in those letters.
This registry is accessible online here: Gastric Cancer Registry Login. If you have any questions regarding the registry, please contact the research assistant for the Gastric Cancer Registry, Liz Schackmann, at (650) 724-9948 or firstname.lastname@example.org.