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 cancer of the pancreas. If you know of a pancreatic cancer registry which is not included in the list below, please do let us know. Thank you.


 

Known Pancreatic Cancer Registries

I. United States (alphabetical by state)

 

Pancreatic Cancer Family Registry
NorthShore University
Evanston, Illinois
Reference

Pancreatic Cancer Family Registry
Northwestern University
Chicago, Illinois
Reference

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

The National Familial Pancreas Tumor Registry *
Johns Hopkins University Hospitals
Baltimore, Maryland
Contact: 410-955-3502
Email: pancreas@jhmi.edu
Reference 1
Reference 2

Pancreatic Cancer GEnes Study *
Dana-Farber Cancer Institute
Boston, Massachusetts
Reference

Pancreatic Cancer Genetic Study *
Karmanos Cancer Center / Wayne State University
Detroit, Michigan
Contact: Kate Sargent, MS, CGC
313-578-4240
FAX: 313-578-4306
Email: sargentk@med.wayne.edu
Reference

Pancreatic Cancer Genetic Study *
Mayo Clinic
Rochester, Minnesota
Reference

Pancreas Cancer Family Registry *
Creighton University and University of Nebraska Medical Center
Omaha, Nebraska
Reference 1
Reference 2

Pancreas Cancer Registry
Columbia University Medical Center
New York, New York
Contact: Joanna Martinez-Gomez
212-305-9467
Email: info@columbiasurgery.org
Reference

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
Reference

National Pancreatic Cancer Registry
University of Oklahoma Health Sciences Center
Oklahoma City, Oklahoma
Contact: Simone Norman
405-271-8685
FAX: 405-271-8697
Reference

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

Jefferson Pancreas Tumor Registry (JPTR)
Thomas Jefferson University Hospital
Philadelphia, Pennsylvania
Contact: pancreasregistry@jefferson.edu
215-955-9402
Reference

Pancreatic Adenocarcinoma Gene-Environment Risk Study and Registry (PAGER)
Hillman Cancer Center
University of Pittsburgh Medical Center Cancer Centers
Pittsburgh, Pennsylvania
888-PITT-DNA (888-748-8362)
Reference

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

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

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

II. International (alphabetical by country or headquarters)

 

Familial Gastrointestinal Cancer Registry *
Mount Sinai Hospital
Toronto, Ontario Canada
Reference

National Case Collection Familial Pancreatic Cancer
Philipps University of Marburg
Marburg, Germany
Reference 1
Reference 2

EUROPAC
The European Registry Of Hereditary Pancreatitis And Familial Pancreatic Cancer
Reference

Japanese Pancreatic Cancer Registry
Japan Pancreas Society
Kobe, Sendai, and Tokyo, Japan
Reference 1
Reference 2

* member of PACGENE Consortium