National Familial Pancreas Tumor Registry
You may be wondering why joining this study is helpful and for what medical gain we are using the information in the registry.
While the causes of most pancreatic cancer remain unclear, we do know that approximately 5-10% of all pancreatic cancers run in families. (Click here for more information on the genetic aspects of pancreatic cancer.) Other risk factors for pancreatic cancer include cigarette smoking and obesity.
Gathering information from families like your own provides scientists with a unique opportunity to study the cause of pancreatic cancer. This information may ultimately help devise new ways to find pancreatic tumors earlier and develop better treatments for pancreatic cancer.
The primary goals of our research are to:
- Understand the risk of pancreatic cancer in families.
When the registry began in 1994, few people recognized the importance of the familial clustering of pancreatic cancer. Since its beginning, the registry has led the way in demonstrating that pancreatic cancer does cluster in families and that there is likely to be a genetic cause of this clustering. Our work has demonstrated that individuals from familial pancreatic cancer families have a nine-fold increased risk of developing pancreatic cancer. Thus, our research has provided the foundation for genetic counseling and screening for pancreatic cancer. Currently, we are working on ways to improve clinical risk assessment. We developed a tool called PancPRO for health care providers. This tool allows for risk assessment to be tailored to each individual's family history. For information on how your primary care provider can use the PancPRO tool, please visit the Cagene Web site.
- Identify genetic and non-genetic causes of pancreatic cancer.
We have been working to better understand the causes of pancreatic cancer. We have demonstrated that mutations in BRCA2 gene are responsible for the clusters of pancreatic cancer in some families. The genetic basis of most pancreatic cancers, however, remains unclear; therefore we are actively searching for additional pancreatic cancer genees. Currently, we are using the latest high-throughput gene sequencing and genotyping technologies to identify pancreatic cancer genes. In addition, we collect information on lifestyle factors that may influence pancreatic cancer such as cigarette smoking, medical history of diabetes and pancreatitis, and environmental exposures.
- Facilitate the early detection of pancreatic cancer.
The NFPTR has been working to improve the early detection of pancreatic cancer. Our early studies have shown that individuals with a family history of pancreatic cancer represent a high-risk group that may benefit from early detection screening. In 1998, our partnership with Dr. Canto's early detection screening trials (CAPS) began, and recently the fourth stage of this study, CAPS 4, has concluded. Additionally, we are working with Dr. Michael Goggins' Early Detection laboratory as well as the national Early Detection Research Network (EDRN) on the development of diagnostic and early detection bench markers for pancreatic cancer.
Related Areas of Research:
Click here to learn more about additional pancreatic cancer research studies at Hopkins.
Click here to learn more about the history of the NFPTR.