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NCT Number: NCT02886247

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

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.

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Key information

Conditions

Pancreatic Cancer, ATM, BRCA, Hereditary Cancer Congenital Abnormalities Congenital, Hereditary, and Neonatal Diseases and Abnormalities Digestive System Diseases Digestive System Neoplasms Endocrine Gland Neoplasms Endocrine System Diseases Genetic Diseases, Inborn Hereditary Sensory and Autonomic Neuropathies Heredodegenerative Disorders, Nervous System Neoplasms Neoplasms by Site Nervous System Diseases Nervous System Malformations Neurodegenerative Diseases Neuromuscular Diseases Pancreatic Diseases Pancreatic Neoplasms Peripheral Nervous System Diseases Polyneuropathies

Age range

18 year and older

Sex eligibility

All sexes

Study type

Observational

Primary location

Who can participate

Healthy volunteers accepted: Yes

Only the study team can determine whether someone qualifies for participation.

Inclusion criteria

  • personal or family history of pancreas tumors

Exclusion criteria

  • none

Treatment and study plan

Primary outcomes

  1. pancreatic cancer

    Time frame: 35 years

Study contacts

Contact information is provided by the study sponsor or research team.

Alison Klein, PhD, MHS

CONTACT

[email protected]

410-955-3502

Sponsors and collaborators

Lead sponsor

Johns Hopkins University

Other

Collaborators

  • National Cancer Institute (NCI)

Registry information

Official study title

National Familial Pancreas Tumor Registry

Acronym: NFPTR

Important dates

Study start
1994
Primary completion
2030
Study completion
2032
First posted
Sep 1, 2016
Registry last updated
Jul 25, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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