Oregon Colorectal Cancer Registry
The objective of the Oregon Colorectal Cancer Registry (OCCR) is to establish a centralized community resource that will aide in the identification, care and study of individuals who are at increased risk of developing colorectal cancer, so that an overall reduction in this cancer is achieved.
The specific aims of the OCCR are to:
1) Collect pedigree information, epidemiological data and related biological specimens from patients with a family history of CRC in order to provide a resource for future interdisciplinary and collaborative research.
2) Identify and enroll the CRC at-risk and high-risk population in the state of Oregon and beyond that would benefit from improved screening recommendations and referral to genetic services.
3) Serve as a referral and educational resource for physicians and other medical personnel so that a better understanding of inherited CRC syndromes and their related screening recommendations can be had.
4) Facilitate a multidisciplinary approach to patient care at OHSU that will combine the disciplines of surgery, oncology, and gastroenterology with Medical Genetics, specialized nursing, and supportive care services.
hereditary colorectal cancer syndromes
1) The subject must be at least 18 years of age to enroll in the registry.
2) The subject must be competent to consent to the study and may be asked to respond to an epidemiology questionnaire.
3) The subject must have at least one of the following:
o Undergoing surgery for the treatment of CRC, appendiceal cancer, or adenomas. This includes subjects who have sporadic CRC and familial CRC.
o Undergoing surgery or treatment for ulcerative colitis or Crohn’s disease.
o Have at least two, first (child, sibling or parent) or second-degree (grandchild, niece, nephew, aunt, uncle, grandparent) biological relatives, living or deceased, diagnosed with colorectal, endometrial or bladder cancer at or before 60 years of age.
o Have at least one first-degree (child, sibling, parent) biological relative, living or deceased, diagnosed with colorectal cancer diagnosed before age 50.
o Have a personal history of any Lynch related cancer or a diagnosis of 10 or more colon polyps diagnosed at or before age 95.
o From any family where a known inherited syndrome has been detected, or is suspected, will also be eligible to participate in the OCCR, so long as the first two study criterion are met. For the purposes of this registry, known colorectal cancer syndromes are hereditary non-polyposis colorectal cancer (HNPCC)/Lynch Syndrome, familial adenomatous polyposis (FAP), attenuated familial adenomatous polyposis (AFAP), juvenile polyposis (JP), Peutz-Jeghers Syndrome (PJS), E-cadherin (CDH1) and MYH Associated Polyposis (MAP).
o Have or are suspected of having a colorectal adenoma or colorectal cancer at the time of colonoscopy. This includes subjects who have sporadic CRC and familial CRC.
18 - 99
Healthy Volunteers Needed
Duration of Participation
Indefinate. This study has no end date.
Charlie Borzy, CCRC, 503-494-4949, firstname.lastname@example.org
Kyla Siemens, MS, 503-494-4796, email@example.com