Clinical Hereditary GI Cancers Registry
The clinical hereditary GI cancers registry is a program with the main goal of cancer prevention and early detection for patients with a significantly increased risk of developing GI and non-GI cancers through ongoing review and individual adjustment of every patient’s care plan. The registry is run by a multidisciplinary team of specialists, with expertise in GI genetics, genetics counseling, interventional gastroenterology, surgery, medical oncology, radiation oncology, radiology, and pathology (genomics).
This registry is available to patients with a confirmed or suspected diagnosis of a hereditary GI cancer syndrome. Hereditary GI cancer syndromes can significantly increase an individual’s risk of developing GI cancers as well as non-GI cancers in other parts of the body. This registry covers the following diagnoses, both confirmed and suspected, among others:
- Colorectal cancer syndromes
- Lynch syndrome
- Familial adenomatous polyposis syndrome (FAP)
- MUTYH-associated polyposis syndrome (MAP)
- Cowden syndrome
- Juvenile polyposis syndrome
- Peutz-Jeghers syndrome
- Unexplained polyposis
- Serrated polyposis syndrome
- Pancreatic cancer syndromes
- BRCA1, BRCA2, PALB2, ATM, and CHEK2
- Hereditary pancreatitis
- Peutz-Jeghers syndrome
- Gastric cancer syndromes
- Hereditary diffuse gastric cancer
- Esophageal cancer syndromes
- Familial Barrett's esophagus
- Tylosis palmeris et planteris
- Other considerations
- Neuroendocrine tumors
- Gastrointestinal stromal tumors (GIST)
How it works
The registry aims to provide the best care for its patients by establishing and optimizing personalized care plans for each patient. These care plans are discussed further at multidisciplinary clinical case conferences, held regularly by our faculty and staff. When a patient case is reviewed at these conferences, each specialist in the group provides current information regarding the patient’s diagnosis, updates in management guidelines from professional medical societies, new therapies that may be available, and any research studies or clinical trials that may available to the patient. Once the team agrees upon an individualized care plan for a specific patient, it is shared with the patients by our genetic counselor.
Each patient’s case is reviewed approximately once per year, at which time their care plan may be revised as medical knowledge continues to develop. By proactively reviewing cases, we hope to provide highly personalized care for those with significantly increased risk for GI cancers.
Benefits of participation
- Access to a team of specialists with expertise in your confirmed or possible diagnosis of a hereditary GI cancer syndrome, including a genetic counselor. A personalized care plan that is regularly updated as the medical community learns more about your diagnosis
- Helpful reminders to schedule recommended medical appointments
Some cancers and other types of disease have a genetic or hereditary component. Our genetics team focuses on hereditary gastrointestinal cancer syndromes, Our genetics team includes genetic counselors certified by the American Board of Genetic Counseling. We also train the next generation of genetics counselors as we have one of the few programs in the country for students to obtain degrees in genetics counseling.
Before each patient’s initial genetic counseling appointment, they are asked to complete a family history questionnaire, which will ask about their personal and family history of cancer. It may be beneficial for patients to speak with family members before their appointment in order to clarify various relatives’ cancer diagnoses and ages at diagnosis.
During the initial appointment, our GI genetics team will collect additional health information, review the patient’s cancer family history, and assess the patient’s chance of having a hereditary cancer syndrome. Some findings in a medical and family history that are suggestive of a hereditary cancer predisposition syndrome are:
- Cancer diagnosis at a young age
- Multiple family members diagnosed with the same cancer or related cancers.
- One or more individual with multiple primary cancer diagnoses
If it is determined that a patient has a significant chance of having a hereditary cancer syndrome, then genetic testing will be offered. Genetic testing for the diagnosis of a hereditary cancer syndrome is beneficial, as it can confirm a diagnosis, provide specific cancer risks, provide guidance regarding appropriate cancer surveillance (such as the frequency of screening tests), and allow family members who may also be at risk of having the same syndrome to undergo genetic testing.
Genetic testing is voluntary, so when it is offered, our genetics team provides counseling about possible genetic diagnoses, medical management options, inheritance, and different genetic testing options in order to promote informed decisions. The team will also coordinate the genetic test and communicate the results to the patient.