||5R03CA096429-02 Interpret this number
||University Of Utah
||Development of a Registry for Familial Pancreatic Cancer
DESCRIPTION (provided by applicant):
Adenocarcinoma of the pancreas is the fourth most common cause of cancer death
in the United States. It affects about 28,600 Americans each year and the
mortality rate equals the incidence. Five to 10 percent of cases aggregate in
families generally in a pattern consistent with autosomal dominant
transmission with variable penetrance. There are a few rare syndromes for
which a genetic etiology has been identified. However, the etiology has not
been defined for the majority of familial cases. Identification of high-risk
families and registration of the members is fundamental as a resource for gene
discovery and future studies to refine identification of environmental
factors, develop prevention strategies and test interventions. The aim of this
proposal is to develop a high-risk population registry to provide a basis for
future research and the specific objectives are:
1) Characterize the families with clustering of pancreatic cancer identified
in the Utah Population Database (UPDB), 2) Create a registry of these
families, 3) Procure blood and tissue blocks for DNA extraction, 4) Establish
systems necessary so that the persons in this registry are available to
participate in future studies to include gene discovery, identification and
validation of environmental and lifestyle risk factors, chemoprevention
trials, and interventional studies that potentially could include medical
(targeted gene therapy, tumor vaccines), surgical and endoscopic modalities.
The investigators intend to participate in an international consortium of
registries currently in development to increase the statistical power for such
studies as listed above.
Established and validated genetic epidemiological techniques developed at this
institution will be used to characterize the families. Probands, or next of
kin for deceased persons, from informative families will be contacted and
invited to participate using a validated method that assures confidentiality.
For consenting families, a family advocate will be identified to recruit
relatives and assist in refining the pedigree. Consent will be obtained to
collect medical records and pancreatic cancer tissue blocks from the proband.
The pedigrees will be expanded and registered. Subjects will be notified of
future registry studies to include questionnaire completion, blood testing for
DNA, and clinical trials to be developed. This proposal will allow the
investigators to provide access a unique and important resource on a local and
a national level. The goal corresponds with the National Cancer Institute
Initiative to "identify, characterize, and understand the genes that cause or
play a role in familial cancer."