Welcome to the website of the Sanford R. Weiss, MD, Center for Hereditary Colorectal Cancer. We are happy that you visited us. The purpose of this site is to provide helpful information about the syndromes of inherited colorectal cancer.
Only 5% of all cases of colorectal cancer are hereditary, where a mutated gene causes the cancer and can be passed down from a parent to a child. Inherited colorectal cancer, like other inherited cancers, is an accelerated version of regular cancer. It comes on younger, it can occur in more than one place in the colon and cancer can affect several different organs. Inherited cancer runs in the family so there is often a strong family history. It is very important to diagnose inherited colorectal cancer when it is present, because then there is the opportunity to screen family members by genetic testing, and to prevent cancer by timely testing and treatment.
It is our mission at the Sanford R. Weiss, MD, Center for Hereditary Colorectal Cancer to prevent deaths from inherited colorectal cancer, and we dedicate ourselves to this task every day. In fulfilling our mission we develop a partnership with our patients, their families and their family physicians. It is important that our patients follow suggested appointments and treatment, to the best of their ability. On our part we are always ready to accommodate special requests and circumstances, and are used to helping families from all over the United States and the world.
While we work hard to diagnose, test, treat and follow-up our patients, we are also concerned with education and research. At this time of easy access to media there is a lot of dangerous misinformation available to patients that tends to confuse and dilute what is correct and important. We have developed resources for patients and families that provide reliable, important and helpful information about the syndromes we treat. We also take seriously our task of educating other healthcare providers, and have important leadership roles in national and international societies. Our registry is one of the largest in the world, is backed by years of experience and offers the highest levels of expertise. Our role is to set the standard of excellence of care of patients with inherited colorectal cancer.
Research is the third pillar of our practice. Hereditary colorectal cancer syndromes are uncommon, and there is much that is not known. We have the privilege of caring for large numbers of affected patients, and also the responsibility of using our experience to further the knowledge of these conditions.
Finally, hereditary colorectal cancer is a serious condition. While it can feel unsettling to know you are at risk, we at the Sanford R. Weiss, MD, Center for Hereditary Colorectal Cancer are available to help you maintain your life to the fullest. Accessing this website is the start. We are glad you are here.
James M. Church, MD
Director, David G. Jagelman Inherited
Colorectal Cancer Registries
The Sanford R. Weiss, MD, Center for Hereditary Colorectal Neoplasia (The Weiss Center) is made up of health care providers from multiple disciplines, who are dedicated to the care of patients with or at risk for hereditary colorectal cancer syndromes. In 1979, Dr. David G. Jagelman established Cleveland Clinic’s Familial Polyposis Registry. His intent was to follow high-risk colorectal patients and families with a personal and/or family history of inherited colorectal cancer. In 1989 Dr. Jagelman left and his role was taken by Dr. James Church. At that time, Hereditary Non Polyposis Colorectal Cancer was added to the registry. In 2008 The Weiss Center was established after receiving an endowment from Sanford R. Weiss M.D., who was a patient of ours with FAP.
The mission of The Jagelman Registry and The Weiss Center is to prevent death from colorectal cancer or cancer of other organs involved in these syndromes by excellent patient care, effective education, and clinically relevant research.
- To identify patients at high risk for colorectal cancer by virtue of their family history or tumor genetics
- To advise such patients of their risk and help in selection of appropriate screening tests and therapy
- To provide specialized counseling and genetic testing where appropriate
- To act as a patient advocate, and facilitate testing, counseling, and treatment appointments
Cleveland Clinic is committed to identifying patients who may have Lynch syndrome by a routine screening process of patient tissues. The Digestive Disease and Surgery Institute, Genomic Medicine Institute, Pathology and Laboratory Medicine Institute, and Women’s Health Institute have collaborated to screen all colorectal and endometrial cancers that are surgically removed at Cleveland Clinic for Lynch syndrome by microsatellite instability (MSI) and/or immunohistochemistry (IHC) testing. Routine screening of colorectal cancers with MSI or IHC was initially recommended in 2009 by the Evaluation of Genomic Applications in Practice and Prevention (EGAPP).
The Weiss Center also holds specialized multidisciplinary clinics for patients with hereditary colorectal syndromes. Physicians and care givers work together to provide a team approach to patients and families to facilitate screening and interventions as needed.
- 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 their clinical implications
- To encourage and foster the development of inherited colorectal cancer registries throughout this country and the world
As part of our commitment to educating patients about the importance of family history, we developed an online risk assessment that asks questions about personal and family history of colon polyp and cancer to determine an individual’s risk of developing colorectal cancer and subsequently provide them with recommended screening options.
- To carry out clinically important research on inherited colorectal cancer syndromes
The cornerstone of the Weiss Center is the David G. Jagelman Inherited Colorectal Cancer Registries. Here are some frequently asked questions about the Registries.
What is a registry?
A registry is a database of patients and families with hereditary colorectal cancer that forms the basis of patient care, education and research. It allows coordination and integration of care and its site is the setting where patients and families can meet with specialists.
What is the role of the registry?
The main role of a registry is to allow for effective coordination of evaluation and care of patients at high familial risk of colorectal cancer. The aim is cancer prevention. In addition, a registry:
- Promotes the knowledge of the risks and implication of a family history of colorectal cancer
- Provides the best care to patients and families
- Conducts research
The registry will:
- Educate patients and their families about the disease, tests, surgery options, surveillance protocols and studies
- Refer patients and families to meet with a genetic counselor for genetic consult
- Provide support and counseling
- Ensure that patients receive the best care
How can a registry help?
The registry educates patients and their families, provides support and counseling, and ensures that patients receive the appropriate care needed to live a long healthy life.
The Registry provides patients and their families information about their disease. The coordinators will help patients and families understand who is at risk, and what type of surveillance testing should be done and when. The registry coordinators will also review the different types of procedures, procedure instructions, different types of surgical options as well as current clinical trials available to patients and families.
Support and Counseling:
The Registry will be a resource for patients and their families if they have questions regarding their disease. The coordinators will also be available to listen to patients when they need to talk and to provide patients with questions to ask their physicians when looking for the best care at outside facilities when unable to be seen at Cleveland Clinic. The Registry encourages patients to educate themselves on their disease and will provide patients with the available resources to do that. The coordinators also encourage patients to meet with genetic counselors to discuss in greater detail the benefits of genetic testing and how that will affect the whole family.
The Registry coordinators will help facilitate patients in making their initial appointments with the appropriate specialists as well as scheduling appointments in our hereditary caner “High Risk Clinic.” Coordinators will be available to patients before, during and after physician appointments to answer questions. Patients in the Registry receive reminders of annual examinations, and coordinators can assist patients in making follow up appointments and test.
How do I join the Registry at Cleveland Clinic?
A patient needs to talk with a registry coordinator, who will take a family history to determine if participation in the registry is appropriate. This can be done in person or over the phone. Once eligibility for participation is determined, a coordinator will discuss the consent form for participation. The consent form summarizes information on the registry, risks and benefits, confidentiality, and voluntary participation. If the patient is interested in participation, verbalizes an understanding and has no questions they can sign the consent, when being seen in person. An original copy of the consent is kept on file with the registry and one copy is given to the patient. If the patient is not seen in person then the registry coordinator will mail out a study fact sheet to the patient with a medical release form that is accompanied with an envelope to be completed and sent back to the registry. Once received the patient is enrolled into the registry.
Being in a registry does not affect your care with your own physician. It is important to note that patients in a registry are still under the care of their referring doctors. Registries do not assume the care of its participants. The main role of the registry is to educate and support patients.
What information will the Registry need?
Once a consent form is signed, a confidential chart is started which consists of 6 parts; a pedigree (a family tree), clinical records, diagnostic test results, correspondence, outside records and the original signed consent form. The Registry will collect all records regarding medical and surgical treatment pertaining to the disease. Every patient will sign a medical release form to help us gather the patient’s outside records. The Registry will also collect death certificates on deceased family members to confirm the actual cause of death. The Registry will do an extensive personal and family history by developing a family pedigree, which will be an ongoing project since families are continually changing.
What is done with this information?
All records obtained by the Registry are kept in a confidential chart. Each family is assigned a Registry identification number and each member of that family is given a patient number. All records collected are filed in a family chart under the appropriate family member. The records are also entered into a password-protected database. The information is used to learn more about the patient and their family history, track the patient’s medical care, and is also used for research purposes.
What about confidentiality?
All records obtained by the Registry are kept in secure confidential files within the Registry Office. The only people permitted to review those records are the Registry personnel and physician caring for those patients. The Registry is approved by the Institutional Review Board (IRB) at Cleveland Clinic and is bound by regulator guidelines to assure patient confidentiality.
How do I get in touch to the Registry?
The David G. Jagelman Inherited Colorectal Cancer Registry
Colorectal Surgery - A30
9500 Euclid Avenue
Cleveland, OH 44195
Telephone: 216.444.6470, 800.223.2273 ext. 46470
What We Treat
- Familial adenomatous polyposis
- MYH-associated polyposis
- Serrated polyposis syndrome/hyperplastic polyposis syndrome
- Juvenile polyposis syndrome
- Peutz-Jeghers syndrome
- PTEN Hamartoma Tumor Syndrome, Cowden Syndrome, and Bannayan-Riley-Ruvalcaba Syndrome
- Lynch syndrome/HNPCC
- Familial colorectal cancer
- Familial colorectal cancer type X
High Risk Clinics
The staff of the Sanford R. Weiss M.D. Center for Hereditary Colorectal Neoplasia is dedicated to serving patients and families with hereditary colon cancer. To minimize the burdens that can be associated with coordinating medical appointments recommended for patients with hereditary colorectal cancer syndromes, we have created a number of high risk clinics. The high risk clinic is offered a few times a month, with the goal of coordinating all of your appointments related to hereditary colorectal cancer in one day.
The registry coordinators will assist you in scheduling appointments depending on your syndrome and needs. The high risk clinic is staffed by health care providers from a variety of departments. To learn more about our providers, please see the “Our Team” tab.
High-Risk Clinic Day:
A high-risk clinic day has been set aside for individuals and families with inherited colorectal cancer syndromes who need to see multiple specialists. The goal is to make screenings and appointments easier by assisting you to schedule all of your appointments on one day during times set aside especially for you. However, if the days set aside do not fit your schedule, we are more than willing to accommodate you at alternative times.
Here is an example of a schedule for a patient with Lynch syndrome being seen in the high risk clinic.
- 8 a.m. – Consultation with gynecologic oncologist
- 9:15 a.m. – Consultation with dermatology
- 10:30 a.m. – Consultation with colorectal surgeon
- 11 a.m. – Colonoscopy and upper endoscopy
- Noon – Lab appointment for blood work
Here is an example of a schedule for a patient with familial adenomatous polyposis being seen in the high risk clinic.
- 9 a.m. – Thyroid ultrasound
- 10 a.m. – Consultation with colorectal surgeon
- 10:30 a.m. – Consultation with genetic counselor
- 11:30 a.m. – Flexible sigmoidoscopy
During your visit, a registry coordinator will also be available to provide you with assistance. Your healthcare providers will be informed about your assessment and the recommendations made by the specialists in The Weiss Center.
Preparation for your Appointment:
When you call to make your appointment, the registry coordinator will take a family and medical history. Depending on your schedule, you may require special instructions. For example, if you are scheduled for a colonoscopy you will be required clean out your colon. These instructions will be discussed with you at the time of making the appointment. You may be asked to bring copies of your medical records with you, or to sign a release prior to your visit so that we may obtain the necessary medical records.
What to bring with you:
- Photo identification and insurance card
- Support person (or driver if having a procedure)
- We plan on reviewing information with you and although we are always here to answer your questions a support person can assist with remembering the information.
- If you are having a procedure with sedation (colonoscopy/EGD) you will be required to have a responsible adult accompany you.
- Medical records
- Any medical records, including copies of lab results, surgical pathology results, upper endoscopy/colonoscopy procedures, surgeries, genetic testing results, a list of medications, and anything else you may feel is important.
- Family history
- A family history is very important in determining proper care and treatment for you. You can use the following file to make a record of your family history or you can write down a list of important information about your family members such as cancers (and age occurred), surgeries, polyps, children, names, ages, and any genetic testing.
Making an appointment
To make an appointment or to learn more about the David G. Jagelman, M.D. Registries and high risk clinic please contact one of our coordinators at: 216.444.6470 (polyposis), 216.444.4307 (HNPCC/Lynch syndrome) or toll free at 800.223.2273 extension 46470 or 44307.
Make an Appointment
To schedule an appointment or learn more about our services, please call 216.444.6470 or toll free at 800.223.2273 ext. 46470
Get a diagnosis without traveling to Cleveland. With our MyConsult Online Second Opinion service, following a thorough review of your medical records and diagnostic tests, our physician specialists render a second opinion that can be shared with your doctor.