Building the first Gastric Cancer Registry

We believe there is an opportunity to improve prevention, early detection and treatment of gastric cancer.  Fundamental to any gastric cancer research project is building a large database that houses all pertinent information regarding gastric cancer patients and their families.  Currently, no such clinical database exists which could be used to facilitate research into gastric cancer.  To address this shortcoming, the Gastric Cancer Fund is building the first gastric cancer registry to help better understand gastric cancer and to serve as a general resource for developing new strategies for its prevention, early detection, treatment and to maximize quality of life issues after treatment.

The availability of family histories, medical records, biosamples (blood containing germline DNA) and tumor tissue samples will allow researchers to analyze genetic, environmental, geographic, ethnic, occupational and other differences that provide clues that point to risk factors. The data also will help determine the general direction of projects geared towards early detection, educational outreach and other areas of interest to individuals with gastric cancer. Since treatment choices have significant effects on patients’ lives (partial or total gastrectomy, radiation therapy, etc.) the registry will focus on research that hopes to optimize behavioral or lifestyle changes that will improve the quality of life for patients with gastric cancer.

A secure, HIPAA compliant registry database will be developed to store data regarding demographics, medical history, genetic testing, details regarding an individual’s gastric cancer (histology, stage and grade of tumor, treatment and surgery), family history and epidemiologic data.  Epidemiologic data will be obtained through a questionnaire developed specifically for this unique population which will be used to explore a possible causal relationship between lifestyle, environment and personal risk factors in the development of gastric cancer.  The registry database will be designed so that researchers can analyze multiple variables in seconds and also can export data into formats that can be analyzed in the future using more sophisticated analysis methods.

In addition to basic statistical analysis and epidemiologic research, the registry will also leverage a high performance computing and storage system to help conduct state-of-the-art genomic analysis of gastric cancer tissue and blood DNA samples.  For example, the registry will develop a unique resource of samples from which researchers will be able to conduct sophisticated genomic analysis.  This will include studies that apply innovative technologies to delve into the molecular complexities of gastric cancer and identify key genomic aberrancies which contribute to patient outcomes.  One such project involves determining the fundamental “digital code” of gastric cancer through large scale DNA sequencing of gastric cancer genomes and identifying errors in the DNA code which contribute to cancer prognosis.  As part of a registry, this digital deconstruction of the gastric cancer genome leading to a gastric cancer molecular compendium, becomes a unique resource from which further discoveries can be made by researchers exploring the wealth of information generated. The gastric cancer registry remains the key because it provide a vital bridge between the community of individuals with gastric cancer and biomedical researchers wishing to determine the fundamental molecular causes of gastric cancer and their clinical ramifications.

Once the gastric cancer registry and complimentary genomic sequencing system are created, the fund will finance leading researchers in both basic science and translational research focused on gastric cancer.  The goal will be to select young, promising researcher to develop and test hypotheses against the registry using the sequencing system.  Initially, the fund will support two to four research grants for $50,000 annually.  The number of grants will be determined by the funding received in year one.