The National Familial Pancreas Tumor Registry (NFPTR) is a research registry that was established at Johns Hopkins University in 1994 by Dr. Ralph Hruban. He started the Registry so that scientists and doctors could learn more about pancreatic tumors, including why they seem to run in some families. Research has shown that approximately 5-10% of all pancreatic cancers are due to a familial tendency. Gathering information from these families provides scientists with a unique opportunity to study the cause of cancer of the pancreas. This information may ultimately help devise new ways to find pancreatic cancers earlier and develop better treatments for pancreatic cancer. The NFPTR team includes clinicians and scientists from a variety of fields including epidemiology, pathology, gastroenterology, molecular biology, genetics, cytogenetics, surgery and oncology. Having such a wide variety of clinicians and researchers who have dedicated their careers to learning more about pancreatic cancer truly enables the Registry to study pancreatic tumors from all angles. This approach has led to great advances in the field of pancreatic cancer research, but we still have a lot to learn.
As of August 1, 2007, 2,434 families have enrolled in the NFPTR. In 874 of these families more than one close relative (i.e. parent/child or siblings) have been diagnosed with pancreatic cancer. In 1,560 of these families a single member of the family has been diagnosed with pancreatic cancer. These families are vital to our research into pancreatic cancer and we are very appreciative for all of their assistance. If your family has been affected by pancreatic cancer, we would certainly welcome your participation in our registry. The actors Michael Landon, Jr. and Rodney Van Johnson are advocates for Pancreatic Cancer Research and have written letters in support of our registry.
To join the registry we ask that your family complete a brief questionnaire regarding your family's cancer history. In selected cases we will request that a small amount of blood (4 tablespoons) be sent for research studies. If you would like to request a questionnaire to complete and register your family with the NFPTR, please click here.
The NFPTR is protected by a Certificate of Confidentiality (NCI-01-062) from the National Institutes of Health, Department of Health and Human Services. This Certificate helps us to protect the very personal information that you provide to our registry.
We created the NFPTR NEWS to keep our families up to date on the pancreatic cancer research being done at Johns Hopkins. Registry participants will receive a copy of our newsletter each December. We hope that you find this newsletter informative and we encourage Registry participants to submit contributions to our future editions.
If you would like more information about the registry or if you would like to refer a family to the NFPTR, please contact:
Alison Klein, Ph.D., Director
or Emily Palmisano, Coordinator
The National Familial Pancreas Tumor Registry
Johns Hopkins School of Medicine
1550 Orleans Street, CRBII 341
Baltimore, MD 21231
410-955-3502(telephone) | 410-614-0671 (fax)
Or send us an email directly at firstname.lastname@example.org
To find a trained genetic counselor in your area go to www.nsgc.org and click on "find a counselor" on the lefthand toolbar. You can then search by different methods, we usually recommend an "advanced search." Simply plug in state and area of specialization (cancer).
To estimate your personal risk of pancreatic cancer based on your family history of pancreatic cancer using the PancPRO computer model, visit the Cagene web site.
The Cancer of the Pancreas Screening Study (CAPS 3) will screen individuals for pancreatic cancer and its precursors using state-of-the-art imaging tests (CT scan, MRI/MRCP, and endoscopic ultrasound) and a panel of biomarkers. This study is the first national American study of its kind, currently involving 4 sites – Johns Hopkins Hospital (Baltimore, Maryland), The Mayo Clinic (Rochester, Minnesota), MD Anderson Cancer Center (Houston, Texas) and University of California (Los Angeles, California).
To learn more about the CAPS 3 study, click here.
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This site is supported by generous educational grants from the Vesalius Trust.
Goldman Center funding from the Sol Goldman Charitable Trust.
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© 2012 Johns Hopkins University | Last modified 11/12/2012