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About registries

What is a hereditary COLORECTAL cancer registry?

A hereditary colorectal cancer registry gathers and stores information on patients and families who have been diagnosed with, or are at risk for a hereditary colorectal cancer syndrome. Hereditary colorectal cancer syndromes are rare. The hereditary colorectal cancer syndromes that may be included in a registry are Lynch syndrome, Familial Adenomatous Polyposis (FAP), MUTYH Associated Polyposis (MAP), Polymerase Proofreading Associated Polyposis (PPAP), Hereditary Non-Polyposis Colorectal Cancer (HNPCC), Juvenile Polyposis Syndrome (JPS), Peutz-Jehger's Syndrome (PJS), PTEN Hamartoma Tumor Syndrome(PHTS), Hereditary Mixed Polyposis Syndrome (HMPS) and Serrated Polyposis Syndrome (SPS).

What does a hereditary colorectal cancer registry do?

Not all registries are the same; they may be new and contain a few families or old and contain hundreds of families. Registries may also provide different services. Depending on venue (academic versus community hospital), funding, leadership, and source of referrals (surgeons, oncologists, and/or geneticists) the purpose or mission of the registry and makeup of the registry team may differ slightly. Some registries may be research based; others may have a clinical/patient care focus; and some may be a combination of both.

Services a registry may provide include:

  • Gather information on patients and families diagnosed with uncommon or rare hereditary colorectal cancer syndromes to be used in research
  • Obtain and store bio-samples for research
  • Identify individuals and family members who are at high risk for developing colorectal cancer by virtue of personal and/or family history
  • Provide support to physicians in managing high risk individuals
  • Provide support, education, and screening/surveillance guidelines to the patient and their family members
  • Facilitate appointments for screening and surveillance exams/tests
  • Provide\facilitate genetic counseling and testing
  • Provide education to the medical and lay community
  • Provide opportunities for research studies for patients and research collaborations for professionals
  • What are the benefits for patients and families?

    Patients who have experienced a personal or family history of colorectal cancer require special attention and support to deal with the short and long term effects of their diagnosis. Registry personnel often develop an ongoing relationship with their patients and act as a point of contact. Registries can educate patients and their family members about their particular syndrome and offer screening and surveillance recommendations. Some registries offer a multidisciplinary team of experts that can manage the complex medical care that patients diagnosed with a hereditary colorectal cancer syndrome need.

    How can a registry help with patient care?

    The primary care physician or specialist may not always have the time or sufficient resources to provide ongoing comprehensive medical care, support, or education. A registry can identify which specialists (GI, colorectal surgeons, oncologists, medical geneticists, etc.) need to be brought in and arrange appointments. It can provide the patients with educational materials on hereditary colorectal cancer syndromes, screening and surveillance guidelines, and treatment options. The registry can send reminder letters or call patients regarding surveillance tests as recommended by the physician. As the patient's advocate, the registry can address questions and concerns and communicate them to the physician, or other resources to help provide the best care.

    What is the mission of a registry?

    Every registry should have a mission statement that puts into words what they hope to accomplish. The mission statement drives the Institutional Review Board (IRB) application, consent form, staffing, and focus. A clear mission statement is the basis from which all else is built. The basic registry mission should be to prevent death from colorectal cancer, and may also include the following goals:

    1) 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 specialized counseling and genetic testing where appropriate
  • To act as patient advocate
  • 2) Education

  • To educate patients and their families on the nature and implications of inherited colorectal cancer
  • To educate physicians and other healthcare professionals on the basics of inherited colorectal cancer syndromes and their clinical implications
  • To encourage and foster the development of inherited colorectal cancer registries throughout this country and the world
  • 3) Research

  • To carry out clinically important research on inherited colorectal cancer