Family Registries

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There is an increasing amount of research into causes of and early detection for pancreatic cancer.  In order to advance this knowledge, family registries have been established in hopes of finding common aspects in families with multiple cases of pancreatic cancer.  The registries examine environmental agents, lifestyle habits, and/or history of pancreatic cancer along with the incidence of other cancers in the family.  Researchers hope that discoveries among families with an increased incidence of pancreatic cancer will lead to improved understanding of this disease.  Participants in the registries include patients and family members.  After filling out a questionnaire, participants may be asked to provide a blood sample for further genetic analysis.  Family registries themselves do not provide early detection for family members of pancreatic cancer patients.

The chart below lists the family registries available in the United States and includes one in Ontario, Canada.  The name and location of each program are provided in addition to contact information and criteria for participation.  Please note that most of these studies are national and not limited to participants in the state of that particular registry.

Creighton University

Omaha, NE
Hereditary Cancer Center High Risk Registry
Carrie Snyder, MSN, APRN-CNS, APNG
402-280-2634800-648-8133
csnyder@creighton.edu
Visit the website

  • Two or more pancreatic cancers on the same side of the family; or
  • Presence of other cancers in the family which may be consistent with a known cancer syndrome, such as breast cancer, ovarian cancer, or melanoma; or
  • Presence of a known mutation in the family.

Dana-Farber Cancer Institute

Boston, MA
Pancreatic Cancer Genes Study (PAGES)
Chinedu Ukaegbu
617-632-6355
cukaegbu@partners.org
Victoriana Curry
617-632-3354
victorianak_curry@dfc.harvard.edu
Visit the website

  • Patients with one first degree relative affected by pancreatic cancer or with multiple affected relatives; and/or
  • Patients with genetic mutations associated with an increased risk of developing pancreatic cancer.

Indiana University

Indianapolis, IN
Indiana Familial Pancreatic Cancer Roster
Cindy Hunter, MS, CGC
317-274-3966
Visit the website

  • Two or more 1st-degree relatives with pancreatic adenocarcinoma.
  • Two or more 2nd-degree relatives with pancreatic adenocarcinoma.
  • Individual with pancreatic cancer, age 60 years or younger.

Johns Hopkins Hospital

Baltimore, MD
The National Familial Pancreas Tumor Registry
Alison Klein, PhD (Director)
410-955-3502
pancreas@jhmi.edu
Visit the website

  • One or more pancreatic cancers in the family. Families with one or more individual(s) with a pancreas mass and/or neuroendocrine tumors are also eligible.

Mayo Clinic

Rochester, MN
Biospecimen Resource for Pancreas Research – Families
Bridget Eversman
800-914-7962 x1
pancreas@mayo.edu
Visit the website

  • Two or more pancreatic cancers in the family; or
  • One or more family members who have had pancreatic cancer and one or more family members who have had melanoma.

Memorial Sloan-Kettering Cancer Center

New York, NY
MSKCC Pancreatic Tumor Registry
Pamela Nunes
646-888-8319
nunesp@mskcc.org
Visit the website

  • Two or more first degree relatives with pancreatic cancer on the same side of the family; or
  • Diagnosed with certain genetic syndromes and have any first degree or second degree relative with pancreatic cancer.  Please contact study staff for details.

Mount Sinai Hospital – Icahn School of Medicine at Mount Sinai

New York, NY
Pancreatic Disease and High-Risk Registry
Anne Aronson
anne.aronson@mssm.edu
212-241-7269
Aimee L. Lucas, MD MS
aimee.lucas@mssm.edu

  • Patients with a family history of pancreatic cancer.
  • Patients with genetic mutations associated with an increased risk of developing pancreatic cancer.

New York Presbyterian Hospital- Weill Medical College of Cornell University

New York, NY
Familial Pancreatic Cancer Family Registry
Michelle Bigg
212-746-4014
mlb2007@med.cornell.edu

  • One or more pancreatic cancers in the family.

NYU Langone Health Perlmutter Cancer Center – Pancreatic Cancer Center

New York, NY
Pancreatic Cancer Genetics and Early Detection Clinic
212-731-6150
Visit the website

Patients with one or more family members with pancreatic cancer
Patients with genetic mutations associated with pancreatic cancer

Oregon Health & Science University

Portland, OR
Oregon Pancreas Tumor Registry (OPTR)
Hope L. Hardaker, MPH
503-494-8820
bakkerh@ohsu.edu
Brett C. Sheppart, MD, FACS
sheppard@ohsu.edu
Visit the website

  • Diagnosis of pancreatic cancer at age 50 or younger in any family member.
  • Two or more pancreatic cancers in extended family members.
  • Diagnosis of disease state that increases risk of pancreatic cancer:
    -Hereditary pancreatitis
    -BRCA 1 or BRCA 2
    -Familial melanoma
    -Von Hippel-Lindau disease
    -Peutz-Jeghers Syndrome
    -Lynch syndrome

Thomas Jefferson University

Philadelphia, PA
Jefferson Pancreas Tumor Registry (JPTR)
Nadine O’Rourke
215-955-9402, option #3
pancreasregistry@jefferson.edu
Visit the website

  • One or more pancreatic cancers in the family.

University of Nebraska Medical Center

Omaha, NE
Pancreatic Cancer Collaborative Registry (PCCR)
Marsha Ketcham, RN, OCN
402-559-5286
800-642-1095 ext. 95286
mketcham@unmc.edu
Visit the website

  • Individuals who have a diagnosis of pancreatic cancer.
  • Individuals with a family history of pancreatic cancer defined as having two or more relatives with pancreatic cancer.
  • Spouses or partners, of individuals with pancreatic cancer are eligible to participate.

University of Oklahoma Health Sciences Center

Oklahoma City, OK
National Pancreatic Cancer Registry
Matthew Grim
405-271-8685
Matthew-Grim@ouhsc.edu

  • Two or more first degree relatives with pancreatic cancer; or
  • Two second degree relatives with pancreatic cancer connected by a relative with any type of cancer.

University of Pittsburgh

Pittsburgh, PA
Pancreatic Adenocarcinoma Gene-Environment Risk Study and Registry (PAGER)
Randall Brand, MD
412-623-3105
Visit the website

  • Two or more pancreatic cancers in the family.
  • Participants must be willing to travel to or live in Pittsburgh for enrollment.

University of Utah Huntsman Cancer Institute

Salt Lake City, UT
Hereditary Gastrointestinal Cancer Registry (HGCR)
Mikaela Larson
Laurel Smith
801-585-2579 (office)
877-422-6860 (toll free)
registry.coordinator@hci.utah.edu
Visit the website

  • Individuals from families with a diagnosis of a syndrome associated with a risk for gastrointestinal cancers or tumors.
  • Individuals from families lacking a diagnosis of a specific syndrome, but whose personal or family history are still suggestive of a hereditary predisposition, i.e.:
    -one or more first or second-degree relatives diagnosed with gastrointestinal cancers.
    -gastrointestinal malignancies diagnosed prior to or at age 50.
    -individuals diagnosed with adenocarcinoma of the pancreas.

University of Washington

Seattle, WA
Familial Pancreatic Cancer Study
Josephine Maurer, RN
206-221-7454
jpmaurer@u.washington.edu
Visit the website

  • Two or more first degree relatives with pancreatic cancer, or
  • One relative diagnosed with pancreatic cancer under the age of 50.
  • Especially interested in siblings and identical twins of individuals diagnosed with pancreatic cancer as well as any family member living with pancreatic cancer.

Yale Center for Pancreatic Disease

New Haven, CT
High Risk Program
James Farrell, MD
203-200-5083
james.j.farrell@yale.edu

  • Diagnosis of pancreatic cancer at age 50 or younger in any family member.
  • Two or more pancreatic cancer cases in extended family members.
  • Diagnosis of disease state that increases risk of pancreatic cancer:
    – Hereditary pancreatitis
    – BRCA 1 or BRCA 2
    – Familial melanoma
    – Von Hippel-Lindau disease
    – Peutz-Jeghers syndrome
    – Lynch syndrome

Zane Cohen Centre for Digestive Diseases

Toronto, Ontario, Canada
Familial Gastrointestinal Cancer Registry/Ontario Pancreas Cancer Study
Ayelet Borgida
877-586-5112
fgicr@mtsinai.on.ca

Visit the website

  • Any family with two or more biologically-related individuals with pancreatic adenocarcinoma.

We’re Here to Help

For more information on risk factors, family registries or for free, in-depth and personalized resources and information on pancreatic cancer, contact a Patient Central Associate.

 

Information provided by the Pancreatic Cancer Action Network, Inc. (“PanCAN”) is not a substitute for medical advice, diagnosis, treatment or other health care services. PanCAN may provide information to you about physicians, products, services, clinical trials or treatments related to pancreatic cancer, but PanCAN does not recommend nor endorse any particular health care resource. In addition, please note that any personal information you provide to PanCAN’s associates during telephone and/or email communications may be stored and used to help PanCAN achieve its mission of assisting patients with, and finding cures and treatments for, pancreatic cancer. Stored constituent information may be used to inform PanCAN programs and activities. Information also may be provided in aggregate or limited formats to third parties to guide future pancreatic cancer research and treatment efforts. PanCAN will not provide personal directly identifying information (such as your name or contact information) to such third parties without your prior written consent unless required or permitted by law to do so.

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