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Pancreatic Cancer Registry: For Any Person With a Personal or Family History (NFPTR)

The safety and scientific validity of this study is the responsibility of the study sponsor and investigators. Listing a study does not mean it has been evaluated by the U.S. Federal Government. Know the risks and potential benefits of clinical studies and talk to your health care provider before participating. Read our disclaimer for details. Identifier: NCT02886247
Recruitment Status : Recruiting
First Posted : September 1, 2016
Last Update Posted : December 1, 2020
National Cancer Institute (NCI)
Information provided by (Responsible Party):
Johns Hopkins University

Brief Summary:
The NFPTR was established in 1994 to find the causes of pancreatic cancer. In brief, the investigators are interested in both the genetic and non-genetic causes of pancreatic cancer. The investigators are particularly interested in finding the genes that cause pancreatic cancer to cluster in some families. Up to 10% of pancreatic cancer patients have another close relative who has also developed pancreatic cancer. This clustering of pancreatic cancers in families has yet to be explained; however, the investigators continue to identify new familial pancreatic cancer genes that explain this clustering in subsets of families. For example, in 2009 and 2012 the investigators discovered that mutations in the PALB2 and ATM genes jointly account up to 5% of the clustering of pancreatic cancer in families.

Condition or disease
Pancreatic Cancer, ATM, BRCA, Hereditary Cancer

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Study Type : Observational
Estimated Enrollment : 12000 participants
Observational Model: Family-Based
Time Perspective: Prospective
Official Title: National Familial Pancreas Tumor Registry
Study Start Date : June 1994
Estimated Primary Completion Date : June 2022
Estimated Study Completion Date : December 2022

Resource links provided by the National Library of Medicine

individuals with a personal or family history of pancreas tumors

Primary Outcome Measures :
  1. pancreatic cancer [ Time Frame: 25 years ]

Biospecimen Retention:   Samples With DNA
blood and saliva

Information from the National Library of Medicine

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Ages Eligible for Study:   18 Years and older   (Adult, Older Adult)
Sexes Eligible for Study:   All
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population
individuals with a personal or family history of pancreas tumors

Inclusion Criteria:

  • personal or family history of pancreas tumors

Exclusion Criteria:

  • none

Information from the National Library of Medicine

To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.

Please refer to this study by its identifier (NCT number): NCT02886247

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Contact: Alison Klein, PhD, MHS 410-955-3502

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United States, Maryland
Johns Hopkins Hospital Recruiting
Baltimore, Maryland, United States, 21231
Contact: Alison Klein, PhD, MHS    410-955-3511   
Sponsors and Collaborators
Johns Hopkins University
National Cancer Institute (NCI)
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Principal Investigator: Alison Klein, PhD, MHS Johns Hopkins University
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Responsible Party: Johns Hopkins University Identifier: NCT02886247    
Other Study ID Numbers: NA_00035453
P50CA062924 ( U.S. NIH Grant/Contract )
First Posted: September 1, 2016    Key Record Dates
Last Update Posted: December 1, 2020
Last Verified: November 2020
Additional relevant MeSH terms:
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Pancreatic Neoplasms
Digestive System Neoplasms
Neoplasms by Site
Endocrine Gland Neoplasms
Digestive System Diseases
Pancreatic Diseases
Endocrine System Diseases