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What is a cancer registry?
Expertise in managing inherited colorectal cancer is concentrated in a few
centers around the country. Since 1979 the David G. Jagelman Inherited
Colorectal Cancer Registries at the Cleveland Clinic has been following patients
in a registry for the following inherited colon cancer syndromes: Familial
Polyposis (FAP), Hereditary Non-Polyposis Colorectal Cancer (HNPCC), Juvenile
Polyposis (JP) and Peutz-Jehger’s syndrome (PJ).
Each registry maintains a list of patients and family members who have been
diagnosed with the inherited colorectal cancer syndrome. A family medical
history is taken, including both diagnosed and at-risk individuals, and a family
tree is drawn. All cases and age of onset are documented for each colorectal
cancer, colorectal polyps, associated cancers and extra colonic manifestations
are documented to determine the inherited colorectal cancer syndrome. The
confirmation of diagnosis and age of onset is essential in assessing individual
risk and in providing appropriate surveillance guidelines.
Participants in the registries are required to sign a consent form to
participate. The consent form explains the benefits, procedures, risks, issues
of confidentiality concerning the registry, and will allow biological samples of
blood and tissue to be collected for studies or future research.
All attempts to procure medical record documentation will be pursued. A
release of information form for each individual will be requested. Deceased
individuals next of kin will be approached to sign a medical release.
Patients will be contacted periodically for follow-up to obtain updates on
family and medical history. Diagnosed and at-risk individuals will be encouraged
to report screening tests and results. Current screening recommendation and
further studies will be discussed.
Who works in a cancer registry?
Cancer registry personnel include: expert gastroenterologists, surgeons,
geneticists, genetic counselors, pathologists and oncologists, supported by
mental health professionals, nurses, coordinators, clerks and data entry
personnel.
How can a cancer registry help me and my family?
A cancer registry is designed to promote knowledge of the risks and
implications of having a family history of colorectal cancer; to provide the
best clinical care and education to patients and families; and to facilitate
important research.
Patient care:
The most important role of a registry is with patient care. The first step
to joining a cancer registry is for the patient to understand the benefits
associated with the registry as detailed in the Consent form. Signing the
Consent form permits registry personnel to construct an accurate family tree
(called a pedigree) that tells the story of cancer in the family. It may be
necessary to investigate the family history by contacting other family members
and obtaining medical records to confirm polyps and cancers. A thorough and
accurate family tree is the key to sorting out who in the family is at risk, how
strong the risk is, and what examinations are recommended to be done. Registry
personnel coordinate testing, appointments, and treatments. They may give advice
about insurance concerns, payment problems or any other problems that arise
related to the inherited condition.
Education:
Patients and their families will have the opportunity to learn more about
inherited colorectal cancer and how cancer may be prevented. Registry
participants will keep informed about new developments in colorectal cancer
prevention and treatment through periodic newsletters. Registries also take part
in programs to educate physicians about the complexities of inherited colorectal
cancer.
Research:
Registries are excellent forums for research because of the volume of
information available for study. Research is the hope of cancer prevention.
Patients and their families will be informed of research studies in which they
may qualify and wish to participate. Many safeguards built into the research
process protect patients against harm. National and international groups allow
registries and their workers to share ideas and collaborate on studies with
other registries around the world.
Colorectal cancer registries also:
Facilitate surveillance. Through intimate contact with patients and
families, the registry can build a trusting relationship, allowing for honest
feelings and fears to be discussed and dispelled, and can steer patients to
understand the importance of maintaining surveillance protocols for themselves
and other family members.
Serve as patient advocates. The registry always has the patients’ and
families’ welfare in mind. In addition to medical problems, many patients and
families need assistance with other aspects of their lives affected by
colorectal cancer, such as insurance, employment or social issues. For these
things, patients and their families can rely on the registries as a resource.
Who is eligible to join an inherited cancer registry?
Anyone with a strong family history of cancer (more than two close relatives
with the disease) may contact the registry to discuss their family history with
a coordinator to determine if they are eligible to join the inherited cancer
registry.
Will my information remain confidential?
The confidentiality of patients enrolled in a cancer registry is protected.
The personal information gathered about you is protected in a private file that
is maintained in the registry office, and assessable by registry personnel only.
How can I join a cancer registry?
To join the David G. Jagelman Inherited Colorectal Cancer Registry, call
800/998-4785.
The David G. Jagelman Inherited Colorectal Cancer Registries
The mission of the David G. Jagelman Inherited Colorectal Cancer Registries,
established in 1979 by David G. Jagelman, MD, is to prevent death from
colorectal cancer by providing the best care to patients and families, by
promoting knowledge of the risks and implications of a family history of
colorectal cancer, and by conducting important research in areas of concerns.
Patient care
- To identify patients at high risk for colorectal cancer by virtue
of their family history
- To advise such patients of their risk and help in selection of
appropriate screening tests and therapy
- To provide information about the availability of specialized
counseling and genetic testing where appropriate
- To act as a patient advocate
Education
- To educate patients and their families on the nature and
implications of inherited colorectal cancer
- To educate physicians and other healthcare professionals about
the basics of colorectal cancer genetics and the clinical implications
- To encourage and foster the development of inherited colorectal
cancer registries throughout this country and the world
Research
- To carry out clinically important research on inherited
colorectal cancer
Collaborative family registry
Through collaboration between The Cleveland Clinic Foundation’s
Departments of Gastroenterology, Colorectal Surgery and Medical Genetics, and
sponsored by the National Cancer Institute, an international registry of
families who have been clinically diagnosed with an inherited colorectal
cancer syndrome has been established. We are looking for patients who have
three or more relatives with colorectal cancer, or at least two relatives with
colorectal cancer and another relative with endometrial cancer.
The registry’s mission is to gather information from a large number of
families to learn about the effects of genetics and lifestyle in the
development of colorectal cancer. This registry is one of the most important
resources worldwide for scientists studying the causes, treatments and ways of
preventing colorectal cancer. The value of this resource will facilitate
future research by the scientific community and ultimately impact the lives of
those affected with colon cancer and their families.
For more information, please call 800/998-4785.
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