Pancreatic Cancer Registries

In this age of molecular biology and armed with new understandings about the role that genes play in pancreatic cancer, familial registries are increasingly seen as a powerful resource to gain a better understanding of the disease – and hence better detection or treatment possibilities. We have been able to identify several cancer registries worldwide that are specific to or involve pancreatic cancer. If you know of a pancreatic cancer registry which is not included in the list below, please let us know.

A. United States (alphabetical by state)

Pancreatic Cancer Family Registry
NorthShore University
Evanston, Illinois

Pancreatic Cancer Family Registry
Northwestern University
Chicago, Illinois

Familial Pancreatic Cancer Registry
Indiana University – Purdue University Indianapolis
Indianapolis, Indiana

The National Familial Pancreas Tumor Registry 
Johns Hopkins University Hospitals
Baltimore, Maryland

Familial Pancreatic Cancer  
Dana-Farber Cancer Institute
Boston, Massachusetts

Pancreatic Cancer Genetic Study 
Karmanos Cancer Center / Wayne State University
Detroit, Michigan
Contact: Kate Sargent, MS, CGC

Pancreatic Cancer Genetic Study 
Mayo Clinic
Rochester, Minnesota

Pancreas Cancer Family Registry 
Creighton University and University of Nebraska Medical Center
Omaha, Nebraska

Pancreas Cancer Registry
Columbia University Medical Center
New York, New York
Contact: Joanna Martinez-Gomez

Familial Pancreatic Cancer Family Registry
Memorial Sloan Kettering Cancer Center
(With New York Presbyterian Hospital-Weill Medical College of Cornell University)
New York, New York

Pancreatic Disease and High-Risk Registry
Mount Sinai Hospital – Icahn School of Medicine at Mount Sinai
New York, NY

New York Presbyterian Hospital- Weill Medical College of Cornell University
Familial Pancreatic Cancer Family
New York, NY

National Pancreatic Cancer Registry
University of Oklahoma Health Sciences Center
Oklahoma City, Oklahoma
Contact: Simone Norman

Oregon Pancreas Tumor Registry
Oregon Health & Science University
Portland, Oregon

Jefferson Pancreas Tumor Registry (JPTR)
Thomas Jefferson University Hospital
Philadelphia, Pennsylvania

Pancreatic Adenocarcinoma Gene-Environment Risk Study and Registry (PAGER)
Hillman Cancer Center
University of Pittsburgh Medical Center Cancer Centers
Pittsburgh, Pennsylvania

Pancreatic Cancer Genetic Study 
University of Texas / M.D. Anderson Cancer Center
Houston, Texas

Familial Pancreatic Cancer Registry
Huntsman Cancer Institute / University of Utah
Salt Lake City, Utah

Familial Pancreatic Cancer
University of Washington School of Medicine
Seattle, Washington

B. International (alphabetical by country or headquarters)

Familial Gastrointestinal Cancer Registry 
Mount Sinai Hospital
Toronto, Ontario Canada

National Case Collection Familial Pancreatic Cancer
Philipps University of Marburg
Marburg, Germany

The European Registry of Hereditary Pancreatitis And Familial Pancreatic Cancer

Japanese Pancreatic Cancer Registry
Japan Pancreas Society
Kobe, Sendai, and Tokyo, Japan



Pancreatic cancer is expected to become the 2nd leading cause of cancer-related death by the year 2020

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