Family Registries
Most cases of pancreatic
cancer appear to occur sporadically with no previous family history
of the disease. However, approximately 5-10% of all pancreatic cancers
are due to a positive family history, meaning at least one first
degree relative (parent, sibling) was diagnosed with pancreatic
cancer. Having a genetic susceptibility to pancreatic cancer does
not mean that a person will develop the disease because risk is
also affected by non-genetic factors including diet, lifestyle,
and environment. Despite increasing research in the field of pancreatic
cancer, understandings of the causes of this disease are still uncertain.
Family registries have been established with the hope of discovering
the causes of familial cancer. These family registries aim to uncover
the unifying characteristics, genetic and otherwise, in families
with multiple cases of pancreatic cancer.
A pancreatic cancer family
registry is a repository of information obtained from patients and
their family members (blood relatives) and from individuals with
a strong family history of pancreatic cancer. Registries examine
lifestyle, environmental and genetic factors, in addition to family
history of pancreatic cancer, genetic syndromes and other cancers
that are believed to be associated with pancreatic cancer. Participation
in a family registry usually requires the completion of questionnaires
about individual and family medical history, family history of cancer,
exposure to environmental agents, and demographic information including
age, ethnicity, education, and occupational history. In addition,
participants may be asked to provide biological specimens such as
a blood or tissue sample for genetic testing. Family registries
are commonly managed by a physician investigator and a study coordinator.
All registries have been reviewed and approved by their respective
Institutional Review Boards for enrolling participants and are required
to protect the privacy of these individuals.
To ensure privacy, unique
study identification numbers are assigned to all information obtained
from registry participants. Additionally, registries are protected
by a Certificate of Confidentiality from the National Institutes
of Health, Department of Health and Human Services. This certificate
protects the personal information provided by families and affords
researchers legal protection from having to involuntarily release
any information. With this certificate, physician investigators
cannot be forced by court order to disclose any protected health
information which may identify registry participants.
Click
here for contact information and a printable version (pdf) of the
following family registries:
| Program
Information |
Requirements
for Participation |
Dana
Farber Cancer Institute
Boston, MA
Pancreatic Cancer Genes Study (PAGES)
|
•
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.
|
| NorthShore
University Health System
Evanston,
IL
Pancreatic Cancer Family Registry
|
•
One or more pancreatic cancers in the family. |
| Indiana
University
Indianapolis,
IN
Familial Pancreatic Cancer Registry
|
•
Two or more pancreatic adenocarcinomas in the family.
(Islet cell tumors are not eligible.) |
| Johns
Hopkins Hospital
Baltimore,
MD
National Familial Pancreas
Tumor Registry
|
•
One or more pancreatic cancers in the family.
|
Karmanos
Cancer Center
Detroit,
MI
Pancreatic Cancer Genetic
Study
|
•
Two or more pancreatic cancers in the family. At least one is
not a parent-child relationship.
|
Mayo
Clinic
Rochester,
MN
Biospecimen Resource for Pancreas
Research - Families
|
•
Two or more pancreatic cancers in the family; or
• One or more family member 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
|
•
Two or more pancreatic cancers on the same side of the family. |
Memorial
Sloan-Kettering Cancer Center
New York, NY
Familial Pancreatic Cancer Family
Registry
|
•
One first-degree relative with pancreatic cancer diagnosed
before age 50; or
• Two or more relatives (including at least one 1st degree
relative) with pancreatic cancer; or
• Three or more second-degree relatives with pancreatic
cancer; or
• Diagnosed with BRCA-1 or 2 mutation and have one or
more pancreatic cancers in the family. |
Mount
Sinai Hospital
Toronto, Ontario, Canada
Familial Gastrointestinal Cancer Registry
|
•
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
|
•
One or more pancreatic cancers in the family. |
Oregon
Health & Science University
Portland, OR
Oregon Pancreas Tumor Registry
(OPTR)
|
•
One or more pancreatic cancers in the family. |
Thomas
Jefferson University
Philadelphia, PA
Jefferson
Pancreas Tumor Registry (JPTR)
|
•
One or more pancreatic cancers in the family.
|
University
of Nebraska and Creighton University
Omaha,
NE
Pancreas Cancer Family Registry
|
•
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. |
University
of Oklahoma
Oklahoma City, OK
National Pancreatic Cancer Registry
|
•
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)
|
•
Two or more pancreatic cancers in the family.
|
University
of Utah
Salt Lake
City, UT
Familial Pancreatic Cancer Registry
|
•
Two or more pancreatic cancers in the family including distant
relations.
|
University
of Washington
Seattle,
WA
Familial Pancreatic Cancer Registry |
•
Two or more first degree relatives with pancreatic cancer
•
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. |
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 .
|
