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 printable version (pdf)
| Location |
Contact |
Requirements for Family
Member Participation |
Dana Farber Cancer
Institute
Boston, MA |
Sarah Hunt
617-632-4788 |
1 or more pancreatic cancers in the family |
| Evanston Northwestern
Healthcare
Evanston, IL |
Lisa Dellefave,
MS, CGC
847-570-1029 |
1 or more pancreatic cancers in the family |
| Indiana University
Indianapolis, IN |
Cindy Hunter,
MS
317-274-3060 |
2 or more pancreatic cancers in the family |
| Johns Hopkins
Hospital
Baltimore, MD |
Emily Palmisano
410-955-3502 |
1 or more pancreatic cancers in the family |
| Karmanos Cancer
Center
Detroit, MI |
Kate Sargent,
MS, CGC
800-527-6266 x2007
|
2 or more pancreatic cancers in the family |
| Mayo Clinic
Rochester, MN |
Heidi Treitline,
Peggy Landhuis
800-914-7962 |
2 or more pancreatic cancers in the family |
|
Memorial Sloan
Kettering
New York, NY |
Jennifer Simon
646-735-8194 |
·
1 first-degree relative with pancreatic cancer diagnosed before
age 50; OR
·
2 or more relatives (including at least 1 first-degree relative)
with pancreatic cancer; OR
·
3 or more second-degree relatives with pancreatic cancer;OR
·
diagnosed with BRCA-1 or 2 mutation and have 1 or more pancreatic
cancers in the family |
| Mount Sinai Hospital
Toronto, Ontario,
Canada |
Heidi Rothenmund,
MSC, CCGC
877-586-1559 |
2 or more pancreatic cancers on the same side of the family |
| University of
Nebraska/Creighton University
Omaha, NE |
Carolyn Deters,
RN, CCRC
800-643-8133 x2945 |
2 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 |
Matthew Grim,
MS
405-271-8685 |
2 or more first-degree relatives diagnosed with pancreatic
cancer OR 2 second-degree relatives diagnosed with pancreatic
cancer connected by a relative with any type of cancer |
| University of
Pittsburgh
Pittsburgh, PA |
Beth Elinoff,
RN, MPH
888-PITT-DNA |
2 or more pancreatic cancers in the family |
| University of
Texas MD Anderson
Houston, TX |
Phyllis Adatto,
MPH
800-248-4856 |
2 or more pancreatic cancers in the family |
| University of
Utah
Salt Lake City,
UT |
Elynn Beck
866-809-3799 |
2 or more pancreatic cancers in the family |
| University of
Washington
Seattle, WA |
Josephine Maurer,
RN
206-221-7454 |
2 or more pancreatic
cancers in the family OR 1 first-degree relative diagnosed
under the age of 50;
especially interested
in siblings and identical twins of individuals diagnosed 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 . |
