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Hereditary Colorectal Cancer Registries

Hereditary Colorectal Cancer Registries | ASCRS

Collaborative Group of the Americas on Inherited Colorectal Cancer 

In 1995, the Collaborative Group of the Americas on Inherited Colorectal Cancer (CGA-ICC) was established to improve understanding of the basic science of inherited colorectal cancer and the clinical management of affected families. Its broad aims are to enlarge the scope of inherited colorectal cancer through:

  1. Education of physicians, allied healthcare professionals, patients and their families.
  2. Linkage to clinical and chemoprevention trials.
  3. Integration of molecular and clinical research at local and national levels.
  4. Resource for developing similar genetic registers.

CGA Contact Information:
Focus Medical Communications
Anne Michaels

Phone:  (504) 208-0122
Websitewww.cgaicc.com

Registries are listed below with a description of the services they offer and contact informtion for each registry.  Please follow the links below to each registry:


The David G. Jagelman Inherited Colorectal Cancer Registry 

The mission of the David G. Jagelman Inherited Colorectal Cancer Registries 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 concern.

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 counselling and genetic testing where appropriate
  • to act as patient advocate

Education

  • to educate patients and their families in the nature and implications of inherited colorectal cancer
  • to educate physicians and other healthcare professionals in 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.

Research

  • to carry out clinically important research on inherited colorectal cancer.

For more information:
The David G. Jagelman Inherited Colorectal Cancer Registry
Colorectal Surgery - A30
Cleveland Clinic
9500 Euclid Avenue
Cleveland, OH  44195
Phone: (216) 444-6470, (800) 223-2273, Ext. 46470
Website: www.clevelandclinic.org/registries/welcome

 

Hereditary Cancer Institute

The purpose of the Hereditary Cancer Institute is to ultimately save lives through the evaluation and identification of families at high risk of hereditary cancer. Once a family is identified as having a hereditary cancer syndrome, education is done with the family about the syndrome. Recommendations for surveillance or early detection are made for those family members who carry a cancer-causing gene, or who prove to be a high risk for having a gene. Publications are also written for family and physician education.

For more information:
Creighton University School of Medicine
Preventive Medicine
2500 California Plaza
Omaha, NE 68178
Phone: (800) 648-8133
Website: http://medschool.creighton.edu/medicine/centers/hcc/

 

The Johns Hopkins Hereditary Colorectal Cancer Registry

The Johns Hopkins Hereditary Colorectal Cancer Registry includes families with hereditary non-polyposis colorectal cancer, familial adenomatous polyposis and other familial polyp syndromes.

We provide education, information and genetic counseling services to patients, families and health professionals. The registry works closely with the Johns Hopkins Cancer Risk Assessment Clinic and contributes to both clinical and basic science studies of hereditary colorectal polyps and cancer

For more information:
Sherri Blair
Johns Hopkins Hospital
550 North Broadway
Suite 108
Baltimore, MD 21205
Phone: (410) 614-4038
Website: www.hopkinsmedicine.org/kimmel_cancer_centers/colorectal.html
Email: hccregistry@wpmail.onc.jhu.edu 

 

The Familial Colorectal Cancer Registry Memorial Sloan-Kettering Cancer Center

The Familial Colorectal Cancer Registry in the Department of Surgery of Memorial Sloan-Kettering Cancer Center includes patients with autosomal dominant diseases such as Familial Adenomatous Polyposis and Hereditary Nonpolyposis Colorectal Cancer Syndromes, as well as those with early age-of-onset (less than 40 years of age) colorectal cancer. A network of specialty services are available to patients and their families afflicted with these problems.

For more information:
Jose G. Guillem, M.D., M.P.H.
Department of Surgery
Memorial Sloan Kettering Cancer Center
1275 York Avenue
New York, New York, 10021
Phone: (212) 639-8278
Fax: (212) 794-3198
Website: www.mskcc.org/cancer-care/trial/01-110
Email: guillemj@mskcc.org 

 

Familial Cancer Program at the University of Vermont

At the University of Vermont, we have a Familial Cancer Program where we maintain a database of families, including whether they meet criteria for syndromes or testing, and whether testing has been performed. The program was founded under a research grant, so the information is considered confidential and is not a part of the clinical record.

We retrieve medical records to confirm diagnoses, offer consultation with a genetic counselor and medical oncologist. We have offered testing both from commercial sources and under research protocols, locally and through collaborators in the US and Canada.

For more information:
Wendy C. McKinnon, M.S., Genetic Counselor
Vermont Regional Genetics Center
1 Mill St.
Box B-10
Burlington, VT 05401
Phone: (802) 847-4495
Website: www.uvm.edu/medicine/vtcancercenter/?Page=clinical_familial.html
Email: mckinnon@salus.med.uvm.edu

 

Hereditary Gastrointestinal Cancer Registry/Huntsman Colon Cancer Institute

The Huntsman Colon Cancer Registry at the Huntsman Cancer Institute (HCI) contains individuals with both familial and hereditary colorectal cancers. The Registry's aims are threefold: research, clinical, and education. It is a resource for researchers at HCI and allows collaboration with both national and international research groups. We contact participants yearly to update their information. We provide clinical and educational support to patients and health care providers in the form of screening recommendations, reminder letters to patients and/or physicians for yearly exams, and a newsletter. Staff includes a gastroenterologist, genetic counselor, and registry co-ordinator.

For more information:
Hereditary Gastrointestinal Cancer Registry
Huntsman Colon Cancer Registry Institute
University of Utah
2000 Circle of Hope, Room 1132
Salt Lake City, UT 84112-5550
Phone: (801) 585-1936
Toll Free: (877) 422-6860
Website: http://healthcare.utah.edu/huntsmancancerinstitute/patient-care/clinics-and-care-teams/high-risk-cancer-research-clinics-and-studies/hereditary-gastrointestinal-cancer-registry/
Email: registry.coordinator@hci.utah.edu 

 

The Center for Families at Risk for Colorectal Cancer
University of Pittsburgh Health System
Magee-Womens Hospital

The UPMC Hereditary Colorectal Tumor Program offers intensive surveillance, expert diagnosis, and prompt treatment when necessary for patients and families at high risk from colorectal cancer (CRC). Using risk assessment strategies, preventive measures, and the full range of diagnostic modalities, clinicians at the Hereditary Colorectal Tumor Program provide an opportunity for these people to prevent cancer and increase quality of life.

Dr. Randall Brand
Genetic Counselor: Beth Dudley, MS, MPH, CGC

For more information:
UPMC Hereditary Colorectal Tumor Program
Pittsburgh, PA 15232
Phone: (412) 623-6810
Website: www.upmccancercenter.com/geneticCounselingServices/contact.cfm

 

UCSF Gastrointestinal Hereditary Cancer Registry

The UCSF Colorectal Cancer Registry, a partner program of the UCSF Cancer Risk Program provides cancer genetics education, cancer risk assessment, genetic counseling and confidential genetic services to individuals and families at risk for hereditary colon cancer. The registry maintains a database of high-risk families providing them access to UCSF clinical studies as well as updates colon cancer screening and prevention information. Currently, genetic counseling and DNA testing for HNPCC and FAP is available to individuals and families as part of a long term research study addressing the long term consequences of genetic testing for inherited susceptibility to cancer.

For more information:
UCSF Gastrointestinal Hereditary Cancer Registry
1600 Divisadero Street, Box 1693
Hellman Bldg. Rm C415E
San Francisco, CA 94143-1693
Phone: (415) 885-7481
Website: http://gi.ucsf.edu/care/services/cancer.html

 

The M. D. Anderson Cancer Center Hereditary Colon Cancer Registry

The Hereditary Colon Cancer Registry at the University of Texas M.D. Anderson Cancer Center includes families with hereditary non-polyposis colon cancer (HNPCC), familial adenomatous polyposis (FAP), and other hereditary polyposis syndromes. The registry also serves individuals with family histories of colon cancer or with an early age at diagnosis who have not been diagnosed with a specific hereditary colon cancer syndrome.

The goal of our registry is to provide education about hereditary forms of colon cancer to families and professionals and also to advance the state-of-the-art prevention of these conditions by conducting genetic, psychosocial and chemoprevention research. These goals are accomplished through the efforts of a multidisciplinary team including physicians, genetic counselors, research nurses, behavioral scientists, and epidemiologists. The M.D. Anderson Cancer Center offers genetic counseling and comprehensive cancer screening services. At this time we also offer genetic testing for FAP, Peutz-Jeghers syndrome, and HNPCC (both MSI and mutation detection) as part of research studies.

Persons enrolled in the registry have the opportunity to receive risk assessment, genetic counseling, cancer screening and, when appropriate, genetic testing. They also will be offered the chance to participate in appropriate research studies. In addition to clinical services and research opportunities, registry participants and professionals may also receive our quarterly newsletter regarding hereditary colon cancer, Generation to Generation. Additional information about the M.D. Anderson Cancer Center Hereditary Colon Cancer Registry is also available at our website.

For more information:
Clinical Cancer Genetics Program
M. D. Anderson Cancer Center
1515 Holcombe Blvd. Unit 209
Houston, TX 77030
Phone: (713) 745-7391
Website: http://www.mdanderson.org/patient-and-cancer-information/cancer-information/cancer-types/colon-cancer/index.html
Email: ccg@mdanderson.org 

 

Familial Gastrointestinal Cancer Registry

We are a multidisciplinary genetic register, established in 1980, to assist Canadian and specifically Ontario families affected with polyposis syndromes, including familial adenomatous polyposis (FAP), hereditary colorectal cancer (HNPCC), and related variant syndromes. Family clinics are arranged to ensure ongoing surveillance and early diagnosis for both patients and first-degree relatives. Timely treatment, either locally or through referral to colorectal specialists, is a focus of our cancer prevention efforts. Our molecular diagnostic programme includes service testing for FAP and testing on a research basis for HNPCC, juvenile polyposis, Peutz-Jeghers syndrome, and atypical polyp syndromes. Counselling and education about inherited colorectal cancer are provided through our genetic counsellors. Access to cancer-related information is encouraged through our patient library; professional reference collection; family guides; and audiovisual material.

For more information:
Zane Cohen Centre for Digestive Diseases Familial Gastrointestinal Cancer Registry
Mount Sinai Hospital
Joseph and Wolf Lebovic Health Complex
Box 24 - 60 Murray Street
Toronto, ON M5T 3L9
Canada
Phone (FGICR/FAP): (416) 586-4800, Ext. 5112
Toll Free: (877) 586-5112
Fax: (416) 586-5924
Website: http://www.zanecohencentre.com/gi-cancers/fgicr
 

Stamford Hospital (FCCR) Familial Colorectal Cancer Registry

This registry is designed to promote knowledge of the implications of having a family history of cancer, to facilitate important research and to provide information/education to individuals and families at risk as well as to healthcare professionals.

Objectives:

  • To educate people at high risk of developing colorectal and related cancers
  • To promote knowledge of the implications of having a family history of colorectal and related cancers
  • To provide up to date information regarding colorectal cancer syndromes, screening and cancer prevention methods
  • To establish and maintain a website containing information regarding the registry, colorectal cancer syndromes, and the genetic counseling program at Stamford Hospital
  • Collect data for the purposes of future research and education

For more information:
Erin Ash, MS, CGC
Registry Coordinator
Cancer Genetic Counseling Program
Bennett Cancer Center
30 Shelburne Road
Stamford, CT 06904-9317
Phone: (203) 276-7693
Email: eash@stamhealth.org
Website: www.stamfordhospital.org/Services/Signature-Services/Bennett-Cancer-Center/Colorectal-Cancer-Registry.aspx
 

Vanderbilt Hereditary Colorectal Cancer Registry

The Vanderbilt Hereditary Colorectal Cancer Registry is dedicated to the understanding of hereditary colorectal cancers by gathering information on patients and their family members who have either had colorectal cancer or, because of family history, are at high risk of developing colorectal cancer. The Registry also enrolls those who have or are at increased risk for developing known hereditary colorectal cancer syndromes such as:

  • Hereditary Nonpolyposis Colorectal Cancer (HNPCC)
  • Familial adenomatous polyposis (FAP)
  • Attenuated familial adenomatous polyposis (aFAP)
  • Juvenile polyposis (JPS)
  • Peutz-Jeghers syndrome (PJS)
  • Hereditary mixed polyposis syndrome

Who Should Join the Registry:

  • You have a personal history of colorectal cancer at age 50 or younger
  • Your family history includes close relatives with colorectal cancer
  • You have a personal or family history of polyposis (many polyps)
  • Your personal family history includes HNPCC related cancers such as endometrial or uterine, renal, ovarian, brain, pancreas, and small intestine

The registry acts as a resource for patients and their family members by providing education, cancer risk assessment, colon cancer screening and surveillance recommendations, as well as genetic counseling and testing.

For more information:
Dana Campbell
Phone: (615) 343-4169
Website: www.vicc.org/hcp/registry/
 

Oregon Colorectal Cancer Registry (OCCR)

The Oregon Colorectal Cancer registry (OCCR) is an extensive, private library of colon cancer data collected from individuals and families across the country. Participants contribute health histories that are carefully documented and reviewed. Researchers can use this information to identify individuals who may benefit from screening measures to detect precancerous changes at an earlier, and potentially more treatable, stage. Additionally, participants may provide blood and tissue samples for the registry that can be utilized for ongoing colorectal cancer research. The registry is a dynamic resource that continues to grow as new patients are enrolled.

Principal Investigator:  Dr. Liana Tsikitis
Registry Coordinator:  Miriam Douthit, MA

For more information:
OCCR
Oregon Health & Science University
3181 SW Sam Jackson Park Rd., L223A
Portland, OR 97221
Phone: (503) 494-8820
Email: occr@ohsu.edu
 

Washington University, St. Louis Inherited Colorectal Cancer and Polyposis Registry

The Inherited Colorectal Cancer and Polyposis Registry at Washington University School of Medicine, St. Louis, was started in the 1970's by Ira Kodner, MD, as a resource for families with inherited colorectal cancer syndromes such as familial adenomatous polyposis (FAP), hereditary non-polyposis colorectal cancer (HNPCC) and other hereditary polyposis syndromes.  The main purpose of the registry is to provide education and support to the patients and their family members with inherited colorectal cancer syndromes through prevention, early diagnosis and treatment of colorectal cancer.  By enrolling in the registry, patients have access to genetic counseling, genetic testing as well as educational events and literature on inherited colorectal cancer syndromes. 

For more information:  
Inherited Colorectal Cancer and Polyposis Registry
Barnes-Jewish Hospital Plaza
660 S. Euclid Avenue, Campus Box 8109
St. Louis, MO  63110
Phone:  (314) 362-0552
Email:  http://www.colorectalregistry.wustl.edu/