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 EUROPAC The European Registry of Hereditary Pancreatitis And Familial Pancreatic Cancer Japanese Pancreatic Cancer Registry Japan Pancreas Society Kobe, Sendai, and Tokyo, Japan  

Our science board is composed of:

James Abbruzzese, MD Chief, Medical Oncology Duke University

Markus Büchler, MD Chairman, Surgery Heidelberg University, Germany

Ralph Hruban, MD Director, GI / Liver Pathology Johns Hopkins University

Eileen O’Reilly, MD Associate Director for Clinical Research – Memorial Sloan-Kettering Cancer Center

Margaret Tempero, MD Chief, Medical Oncology University of California at San Francisco

Our Philosophy About Pancreatic Cancer

Pancreatic cancer is a serious disease. Taking an aggressive rational stance at the earliest possible time, supported by the best medical team, and treated in the most appropriate manner gives the best chance for survival.

We believe in strong patient-physician bonds, scientifically-based treatment, and that comfort can come from knowing that everything that reasonably can be done – is being done.

That the best approach is meeting cancer of the pancreas head-on and armed with the best available information.

Facebook Fundraising is Easy!

Creating a Facebook Fundraiser is easy: Click the Link below and Facebook will take you through the steps! Dedicate your Birthday or another important date to honor a loved one.


Genetic Testing for Pancreatic Cancer

PROPOSED: Every newly diagnosed person with pancreatic cancer (ductal adenocarcinoma of the pancreas) should receive genetic screening prior to beginning treatment – to test for germline genetic mutations in the homologous recombination DNA repair pathway, including genes such as BRCA1, BRCA2, PALB2, and others. These results, in from 12% to 17% of pancreatic cancer patients, suggest that treatment that includes DNA cross-linking agents such as platinum compounds or PARP inhibitors may be superior to standard best practices therapy.

OFFER: Color Genomics offers a 30-gene cancer panel for $224 (normally $249) when the Promotion Code “PANCREATIC” is entered at checkout (price will reduce upon entering this code). This is a physician-ordered saliva kit. Click Here for more information

RATIONALE: The age of precision medicine in pancreatic cancer is approaching … [MORE]

Our mission is to promote awareness, increase education, and further pancreatic cancer research, specifically research aimed at early diagnosis.

Pancreatic cancer is the 3rd leading cause of cancer-related death in the U.S. It is expected to become the 2nd leading cause of cancer-related death by the year 2020. Studies show that death rates for pancreatic cancer are increasing while for most other cancers they are declining.
It’s time to change these statistics!

Early diagnosis is key:
Survival increases dramatically if patients are diagnosed in time for surgery!

For medical information Click Here for our sister site


Walk, Run, or Choose your own!

Choose a walk, run, or any other activity that you like and work to raise donations leading up to your Event! Simply set up your participation page and we will be in touch!


Already registered for your next Race? Dedicate your participation to Pancreatic Cancer. Simply set up your participation page and together we will work towards our shared mission!


Creating a Facebook Fundraiser is easy: Click the Link below and Facebook will take you through the steps! Dedicate your Birthday or another important date to honor a loved one.

Participate in #GivingTuesday for Pancreatic Cancer on December 3rd 2019!! 

Click Here to Add a Calendar Reminder! 

Amazon donates 0.5% of the price of your eligible AmazonSmile purchases to help fight pancreatic cancer!
AmazonSmile is the same Amazon you know. Same products, same prices, same service. Simply use our Link to start shopping!

Speak with a Survivor:

Call 1-800-433-0464 for a free service that will place you in contact with a fellow survivor, or to volunteer to contact someone more recently diagnosed.

Pancreatic Cancer Blog

One of the observations that physicians often made when the standard of care treatment typically consisted of the chemotherapy drug agent of gemcitabine alone, was that many patients with pancreatic cancer (ductal adenocarcinoma of the pancreas) seemed to feel better after the initiation of treatment… More Here



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

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