A Registry for BRCA Mutation Carriers With Pancreatic Ductal Adenocarcinoma

NCT ID: NCT01983410

Last Updated: 2025-12-30

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

ACTIVE_NOT_RECRUITING

Total Enrollment

600 participants

Study Classification

OBSERVATIONAL

Study Start Date

2013-11-04

Study Completion Date

2026-11-30

Brief Summary

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The purpose of this study is to better understand why pancreatic cancer develops in some people who are known carriers of the gene mutation (an abnormality) called BRCA, or its close relative PALB2. The investigators hope to do this by establishing a BRCA/PALB2 mutation carriers Pancreatic Ductal Adenocarcinoma (the common form of pancreatic cancer) Registry. A registry is a database of information.

Detailed Description

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Conditions

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Pancreatic Ductal Adenocarcinoma

Keywords

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BRCA Mutation Carriers PDAC carriers BRCAmut carriers Registry 13-217

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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BRCAmut carrier relatives of a BRCAmut PDAC patient

Who themselves have no known prior or active personal history of non-PDAC malignancy (e.g. breast , ovarian cancer or prostate cancer)

The risk assessment questionnaire

Intervention Type BEHAVIORAL

Blood specimens

Intervention Type OTHER

BRCAmut carrier relatives of a BRCA mutation PDAC

Patient who themselves have a known prior or active breast, ovarian cancer or prostate cancer

The risk assessment questionnaire

Intervention Type BEHAVIORAL

Blood specimens

Intervention Type OTHER

BRCAmut carriers

who are not related to a BRCAmut PDAC patient

The risk assessment questionnaire

Intervention Type BEHAVIORAL

Blood specimens

Intervention Type OTHER

tumor tissue samples will be requested

Intervention Type OTHER

AJ PDAC patients

who are proven non-BRCAmut carriers.

The risk assessment questionnaire

Intervention Type BEHAVIORAL

Blood specimens

Intervention Type OTHER

tumor tissue samples will be requested

Intervention Type OTHER

AJ first or second degree relatives of an AJ PDAC patient from a multiplex family

A family with at least two first or second degree relatives w ho have had PDAC.

The risk assessment questionnaire

Intervention Type BEHAVIORAL

Blood specimens

Intervention Type OTHER

tumor tissue samples will be requested

Intervention Type OTHER

Interventions

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The risk assessment questionnaire

Intervention Type BEHAVIORAL

Blood specimens

Intervention Type OTHER

tumor tissue samples will be requested

Intervention Type OTHER

Eligibility Criteria

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Inclusion Criteria

* BRCA mutation carrier is defined as a person with any mutation of the BRCA gene, including BRCA1, or BRCA2. PALB2mut patients are also eligible.
* Relative of a BRCA PDAC patient is defined as a first-degree relative, which includes, parents, siblings or children.

BRCAmut PDAC Group: Study Group A: Ashkenazi Jewish descent

* Known BRCA mutation carrier.
* Ashkenazi Jewish Descent (at least one parent of Ashkenazi Jewish origin).
* Histologic proof of primary pancreatic ductal adenocarcinoma.
* May have either potentially curable (resectable) primary PDAC, localized but unresectable primary PDAC, or metastatic (stage IV) PDAC.
* Prior personal history of other malignancy; either prior or currently active, including breast , ovarian or prostate cancer is allowed.
* Both previously treated and previously untreated patients are eligible. Previous treatment may include surgical resection, regional radiation therapy, or systemic therapy. Patient may be receiving active therapy.
* Willing to provide blood specimens for correlative studies.
* Willing to provide permission to obtain banked tumor tissue for analysis (previous biopsies or surgical material). New tumor biopsies are not required for entrance into the Registry.

BRCAmut PDAC Group: Study Group B: non-Ashkenazi Jewish descent

* Know n BRCA mutation carrier.
* Histologic proof of primary pancreatic ductal adenocarcinoma.
* May have either potentially curable (resectable) primary PDAC, localized but unresectable primary PDAC, or metastatic (stage IV) PDAC.
* Prior personal history of other malignancy; either prior or currently active, including breast, ovarian, or prostate cancer is allowed.
* Both previously treated and previously untreated patients are eligible. Previous treatment may include surgical resection, regional radiation therapy, or systemic therapy. Patient may be receiving active therapy.
* Willing to provide blood specimens for correlative studies.
* Willing to provide permission to obtain banked tumor tissue for analysis (previous biopsies or surgical material). New tumor biopsies are not required for entrance into the Registry.

BRCA mutation carrier, relative of a BRCA PDAC patients, without PDAC or other BRCAmut related malignancy: (Control Cohort 1A): Ashkenazi Jewish descent

* Known BRCA mutation carrier.
* Ashkenazi Jewish Descent (at least one parent of Ashkenazi Jewish origin).
* No current or prior history of PDAC.
* Relative of a BRCAmut PDAC patient; no prior or active personal history of breast, ovarian, or prostate cancer
* Willing to provide blood specimens for correlative studies.

BRCA mutation carrier, relative of a BRCA PDAC patients, without PDAC or other BRCAmut related malignancy: (Control Cohort 1B): non-Ashkenazi Jewish descent

* Know n BRCA mutation carrier.
* No current or prior history of PDAC.
* First or second degree relative of a BRCAmut PDAC patient; no prior or active personal history of breast, ovarian, or prostate cancer.
* Willing to provide blood specimens for correlative studies.

BRCAmut Carrier relative of a BRCAmut PDAC patient who themselves have prior or active BRCAmut related malignancy (Control Cohort 2A):Ashkenazi Jewish descent

* Known BRCA mutation carrier.
* Ashkenazi Jewish Descent (at least one parent of Ashkenazi Jewish origin).
* No current or prior history of PDAC.
* Relative of a BRCAmut PDAC patient.
* Prior or active personal history of any BRCA-related cancer.
* Willing to provide blood specimens for correlative studies.

BRCAmut Carrier relative of a BRCAmut PDAC patient who themselves have prior or active BRCAmut related malignancy (Control Cohort 2B): non-Ashkenazi Jewish descent

* Know n BRCA mutation carrier.
* No current or prior history of PDAC.
* First or second degree relative of a BRCAmut PDAC patient.
* Prior or active personal history of any BRCA-related cancer.
* Willing to provide blood specimens for correlative studies.

BRCAmut carrier who is not related to a BRCAmut PDAC patient: (Control cohort 3A) Ashkenazi Jewish descent

* Known BRCAmut carrier.
* Ashkenazi Jewish decent (at least one parent of Ashkenazi Jewish origin).
* No current or prior personal history of PDAC.
* Prior personal history of other malignancy including breast, ovarian or prostate cancer is allowed.
* Willing to provide blood specimens for correlative studies.

BRCAmut carrier who is not related to a BRCAmut PDAC patient: (Control cohort 3B) non-Ashkenazi Jewish descent

* Know n BRCAmut carrier.
* No current or prior personal history of PDAC.
* Prior personal history of other malignancy including breast, ovarian, or prostate cancer is allowed.
* Willing to provide blood specimens for correlative studies.

Non-BRCAmut carriers with histologically proven PDAC: (Control cohort 4) Tested for and negative for the BRCA founder mutations.

* Ashkenazi Jewish Descent (at least one parent of Ashkenazi Jewish origin).
* Not related to known BRCAmut carrier.
* Histologic proof of primary pancreatic ductal adenocarcinoma. May have either potentially curable (resectable) primary PDAC, localized but unresectable primary PDAC, or metastatic (stage IV) PDAC.
* Both previously treated and previously untreated patients are eligible. Previous treatment may include surgical resection, regional radiation therapy, or systemic therapy. Patient may be receiving active therapy.
* Willing to provide blood specimens for correlative studies.
* Willing to provide permission to obtain banked tumor tissue for analysis (previous biopsies or surgical material). New tumor biopsies are not required for entrance into the Registry

Exclusion Criteria

* Individuals will be excluded from the Registry if they:
* Are unable to sign informed consent for medical or other reasons. Do not speak English (MSK and UPenn) or do not speak English or Hebrew (BCGC Sites).
* Are under 21 years of age.
* Not willing to provide blood samples for correlative studies.
Minimum Eligible Age

21 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Abramson Cancer Center at Penn Medicine

OTHER

Sponsor Role collaborator

Shaare Zedek Medical Center

OTHER

Sponsor Role collaborator

Sheba Medical Center

OTHER_GOV

Sponsor Role collaborator

Dana-Farber Cancer Institute

OTHER

Sponsor Role collaborator

Johns Hopkins University

OTHER

Sponsor Role collaborator

Memorial Sloan Kettering Cancer Center

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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David Kelsen, MD

Role: PRINCIPAL_INVESTIGATOR

Memorial Sloan Kettering Cancer Center

Locations

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Memorial Sloan Kettering Basking Ridge

Basking Ridge, New Jersey, United States

Site Status

Memorial Sloan Kettering Monmouth

Middletown, New Jersey, United States

Site Status

Memorial Sloan Kettering Bergen

Montvale, New Jersey, United States

Site Status

Cold Springs Harbor Laboratory (Specimen Analysis)

Cold Spring Harbor, New York, United States

Site Status

Memorial Sloan Kettering Commack

Commack, New York, United States

Site Status

Memorial Sloan Kettering Westchester

Harrison, New York, United States

Site Status

Memorial Sloan Kettering Cancer Center

New York, New York, United States

Site Status

Weill Cornell Medical College (Specimen Analysis)

New York, New York, United States

Site Status

Memorial Sloan Kettering Nassau

Uniondale, New York, United States

Site Status

Abramson Cancer Center at University of Pennsylvania Medical Center

Philadelphia, Pennsylvania, United States

Site Status

Shaare Zedek Medical Center

Jerusalem, , Israel

Site Status

Weizmann Institute of Science (Specimen Analysis)

Rehovot, , Israel

Site Status

Sheba Medical Center

Tel Litwinsky, , Israel

Site Status

Countries

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United States Israel

Related Links

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http://www.mskcc.org/

Memorial Sloan Kettering Cancer Center

Other Identifiers

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13-217

Identifier Type: -

Identifier Source: org_study_id