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 these studies are national and not limited to participants in the state of that particular registry. The Mount Sinai Hospital study is limited to Ontario, Canada. The Johns Hopkins Hospital study welcomes worldwide participants.
| Location & Name of Program |
Contact |
Requirements for Family Member Participation |
Dana-Farber
Cancer Institute
Boston, MA
Pancreatic Cancer Genes
Study (PAGES)
|
Chinedu
Ukaegbu
617-632-6355
cukaegbu@partners.org
Denesia Parris
617-632-4788
denesiad_parris@dfci.harvard.edu
http://www.dana-farber.org/Adult-Care/Treatment-and-Support/Treatment-Centers-and-Clinical-Services/Cancer-Genetics-and-Prevention-Program.aspx#3
|
Patients from Dana-Farber with or without a family history of pancreatic cancer.
Two or more pancreatic cancers in the family for people from outside
of Dana-Farber.
|
Indiana
University
Indianapolis, IN
Familial Pancreatic Cancer
Roster
|
Cindy Hunter,
MS, CGC
317-274-3060
http://www.familialcancer.iupui.edu/page04.htm |
Two or more pancreatic adenocarcinomas in the family. (Islet cell tumors are not eligible.)
|
|
Johns
Hopkins Hospital
Baltimore, MD
The National Familial
Pancreas Tumor Registry
| Diane
Echavarria
410-955-3502
pancreas@jhmi.edu
http://www.path.jhu.edu/pancreas/nfptr/index.php
|
One or more pancreatic cancers in the family.
|
Mayo
Clinic
Rochester, MN
Biospecimen Resource for
Pancreas Research - Families
| Jodie
Cogswell
800-914-7962 x1
pancreas@mayo.edu
http://mayoresearch.mayo.edu/mayo/research/petersen_lab
|
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.
|
|
MD
Anderson Cancer Center
Houston, TX
Pancreatic Cancer Genetic
Study
|
Georgina
Armstrong, MPH
garmstrong@mdanderson.org
Phyllis Adatto, MPH
padatto@mdanderson.org
800-248-4856 |
Two or more pancreatic cancers on the same side of the family.
|
Memorial
Sloan-Kettering Cancer Center
New York, NY
Familial Pancreatic Cancer
Registry
| Amethyst
Saldia
646-735-8194
saldiac@mskcc.org
www.mskcc.org/mskcc/html/77832.cfm
|
Two or more first degree relatives with pancreatic cancer; 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
Toronto, Ontario, Canada
Familial Gastrointestinal
Cancer Registry
|
Ayelet Borgida
416-586-1559
877-586-1559 (toll-free)
fgicr@mtsinai.on.ca
http://www.zanecohencentre.ca/gi-cancers/opcs |
Two or more pancreatic cancers on the same side of the family.
|
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.
|
NorthShore
University HealthSystem
Evanston, IL
Pancreatic Cancer Family
Registry
| Kristen
Vogel, MS, CGC
847-570-1379
kvogel@northshore.org
www.northshore.org/genetics/research/pancreatic-cancer.aspx |
Please contact study staff for details.
|
Oregon Health & Science University
Portland, OR
Oregon Pancreas Tumor Registry (OPTR)
|
Miriam Douthit
503-494-8820
tillerym@ohsu.edu
http://www.ohsu.edu/xd/health/services/cancer/getting-treatment/services/pancreatic-tumor-registry.cfm |
One or more pancreatic cancers in the family.
|
Thomas
Jefferson University
Philadelphia, PA
Jefferson Pancreas Tumor
Registry (JPTR)
| Nadine
O'Rourke
215-955-9402, option #3
pancreasregistry@jefferson.edu
www.jeffersonhospital.org/pancreasregistry
|
One or more pancreatic cancers in the family.
|
|
University
of Nebraska and Creighton University
Omaha, NE
Pancreas Cancer Family
Registry
|
Andrea
Williams, MSN, RN
800-648-8133
andreawilliams@creighton.edu |
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.
Presence of a known mutation in the family.
|
University
of Oklahoma Health Sciences Center
Oklahoma City, OK
National Pancreatic Cancer
Registry
| Simone
Smith
405-271-8685
Simone-Smith@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
http://www.ohsu.edu/xd/health/services/cancer/getting-treatment/services/pancreatic-tumor-registry.cfm
|
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
801-585-1936 (office)
877-422-6860 (toll free)
registry.coordinator@hci.utah.edu
http://www.huntsmancancer.org/research/research-programs/hereditary-gastrointestinal-cancer-registry
| 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
http://www.uwgi.org/PancreaticCancer/ |
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.
|
Wayne
State University
Detroit, MI
Familial Pancreatic Cancer
Genetic Study
| Kate
Sargent, MS, CGC
313-578-4240
800-527-6266, ask to be
transferred to Kate Sargent
sargentk@med.wayne.edu
www.karmanos.org/cancer.asp?idcancer=927&cid=19
|
Two or more pancreatic cancers in the family. If there
are only two people with pancreatic cancer in the family, they must
not be spouses (i.e. parents or grandparents) from both sides of
the family nor a parent-child pair. Please contact study staff for
details.
Individuals with pancreatic cancer need not be living.
Spouses/partners are also invited to join and serve as controls.
|
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and services provided by the Pancreatic Cancer Action Network, Inc. are
for informational purposes only. The information and services are
not intended to be substitutes for professional medical advice, diagnosis
or treatment. If you are ill, or suspect that you are ill, see a
doctor immediately! The Pancreatic Cancer Action Network does not
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even though they may be mentioned on this site. 120306
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