Family History Registries

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 health-care 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.

Follow the links below for a description and contact information for each registry.

• Mayo Colorectal Cancer Prevention Registry 
• The David G. Jagelman Inherited Colorectal Cancer Registries 
• Hereditary Cancer Institute, Creighton University 
• Ferguson Inherited Colorectal Cancer Registry (FICCR) 
• The Johns Hopkins Hereditary Colorectal Cancer Registry 
• The Lahey Clinic Hereditary Colon and Rectal Cancer Registry 
• Roswell Park Cancer Institute Colorectal Cancer Family Registries 
• The Familial Colorectal Cancer Registry, Department of Surgery, Memorial Sloan-Kettering Cancer Center 
• Familial Cancer Program at the University of Vermont 
• Familial Colorectal Cancer Registry, Kimmel Cancer Center 
• The Familial Colon Cancer Registry, Huntsman Cancer Institute 
• The Center for Families at Risk for Colorectal Cancer University of Pittsburgh Health System/Magee-Womens Hospital 
• UCSF Colorectal Cancer Registry 
• The M. D. Anderson Cancer Center Hereditary Colon Cancer Registry (U. of Texas) 
• Brazilian Register for Inherited Colorectal Cancer 
• Program for Prevention and Treatment of Hereditary Cancer, Argentina 
• Familial Gastrointestinal Cancer Registry, Toronto, Canada 
• New York Metropolitan Familial Colorectal Cancer Registry 
• Stamford Hospital (FCCR) Familial Colorectal Cancer Registry 
• Vanderbilt Hereditary Colorectal Cancer Registry 
• Oregon Colorectal Cancer Registry 

Services
The Registry provides for identification of all persons at high risk for development of colorectal cancer based on personal or family history. Individuals identified will be sent educational materials. If requested, appointments in our Clinic will be made for consultation, additional education and counseling, diagnostic testing (e.g., colonoscopy), and prevention measures (e.g., medication, removal of polyps). Surgery can be provided for large tumors if necessary.

A newly implemented computerized database makes risk assessment and person contact easier. New medications are being investigated for effectiveness in colorectal cancer prevention. Safer effective screening methods are being developed (e.g., CT colography) to detect colorectal polyps and cancer.

For more information:
Mayo Colorectal Cancer Prevention Registry
Mayo Clinic
East 19 Attention: Jaci McCormick
200 First Street SW
Rochester, MN 55905
Phone: (507) 266-4338
Fax: (507) 266-0350

Services
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:
9500 Euclid Avenue
Cleveland, OH 44195
Phone: (216) 444-6470 or (800) 998-4785
Fax: (216) 445-6935

Services
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

Services
The Ferguson Inherited Colorectal Cancer Registry is a program of Spectrum Health. We are a registry program working with individuals who are at high risk for colorectal cancer due to a strong family history of colorectal cancer and/or colorectal polyps. We work with families who have a known, or suspected, inherited predisposition to colorectal cancer, such has HNPCC, FAP, any of the other polyposis syndromes, as well as Muir-Torre and Li-Fraumeni syndromes.

Our goal is early education and prevention of cancers in high-risk families. We provide risk evaluation, education, screening recommendations, and support. We offer genetic counseling and genetic testing services. We work with families anywhere in Michigan. We provide access to research protocols and education for local health care providers.

For more information:
Ferguson Inherited Colorectal Cancer Registry
72 Sheldon Blvd, SE
Grand Rapids, MI 49503
Phone: 616-356-4054
Fax: 616-356-4040
Email: laurie.dedecker@spectrum-health.org 

Services
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:
Johns Hopkins Hospital
550 North Broadway
Suite 108
Baltimore, MD 21205
Phone: (888) 772-6566
Email: hccregistry@wpmail.onc.jhu.edu 

Services
The Hereditary Colon and Rectal Cancer Registry at Lahey Clinic was established in 1998. Goals of the registry are to help educate patient and their families on the risks of Hereditary Colon and Rectal Cancer and various polyposis syndromes such as Familial Adenomatous Polyposis (FAP) and Hereditary Non-Polyposis Colon Cancer (HNPCC) or Lynch Syndrome, and to conduct clinically important research on inherited colon and rectal cancer. A network of multidisciplinary and specialty services is available to patients and the families of patients who are affected by these genetic diseases including risk assessment, genetic counseling, physician consultations and genetic testing for appropriate individuals. Patients are referred through our medical practice of more than 480 physicians, various community group practices or patient self-referral.

The registry at Lahey Clinic maintains an extensive, IRB approved database of families that is frequently updated and provides those individuals participating with ongoing education, updates on screening recommendations and colorectal cancer prevention.

Additional information can be found on the Lahey Clinic Colorectal Surgery website.

For more information:
Nancy Shinopulos-Campbell, RN, MS
Registry Coordinator
Department of Colon and Rectal Surgery
Lahey Clinic
41 Mall Road
Burlington, MA 01805
Telephone: 781.744.8987
Toll Free: 800.601.9423
Fax: 781-744-5403
Email: Nancy.Shinopulos@Lahey.org 

Services
The Division of Surgical Oncology at Roswell Park Cancer Institute has established colorectal cancer family registries with the following purposes: 1) to register any individual(s) suspected of having hereditary colorectal cancer (or being a member of a cancer prone family) 2) to educate patients and their families 3) to improve prognosis through early detection and surveillance 4) to pursue clinical and scientific research.

The Familial Adenomatous Polyposis Registry encompasses 45 families with follow up of 24 live patients. In addition, we have established a Family Cancer Registry which presently has 11,828 individuals from 499 families with 3,566 cancers diagnosed. In addition to families whose members have a suspicious family history for being members of a cancer prone family, we have registered 55 families which meet the strict Amsterdam criteria for HNPCC and 71 other families whose members lack either the age, or the two successive generations, or the three affected individuals criteria.

For more information:
Carolyn Farrell, MS, CNP, CGC
Clinical Genetic Services
Elm & Carlton Sts.
Buffalo, NY 14263
Tel: (716) 845-8400
Fax: (716) 845-4556
www.roswellpark.org 

Services
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
Email: guillemj@mskcc.org 

Services
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) 658-4310
Email: mckinnon@salus.med.uvm.edu 

Services
The Familail Colorectal Cancer Registry is a collaborative project based on a comprehensive strategy of reducing colorectal cancer. The Registry collects lifestyle, medical and family information, as well as blood and tissue samples to serve as a resource for research focussing on the prevention and early detection of colorectal cancer. Blood and tissue samples are utilized to look for genetic markers related to colorectal cancer. Scientists working with the Registry are developing diagnostic tests to study the predisposition of family members to colorectal cancer. They are also studying the effectiveness of standard treatments for colorectal cancer on patients with inherited forms of colorectal cancer.

The Registry offers individuals at high risk for colorectal cancer the opportunity to discuss their family history with a genetic counselor and an opportunity to have an assessment of their individual risk for colorectal and other related cancers. Genetic testing for HNPCC and FAP is also available through the Jefferson molecular diagnostics laboratory.

For more information:
Familial Colorectal Cancer Registry
Kimmel Cancer Center
Thomas Jefferson University Hospital
1100 Walnut Street, Suite 702
Philadelphia, PA 19107
Phone: (215) 955-0026
Fax: (215) 955-2404
Email: rose6@jeflin.tju.edu 

Services
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:
Huntsman Familial Colon Cancer Registry
University of Utah
2000 Circle of Hope
Salt Lake City, UT 84112
Telephone: 801-585-1936
Toll Free: 877-422-6860
Fax: 801-585-5763
Email: registry.coordinator@hci.utah.edu 

Services

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.

Brochure: Hereditary Colorectal Tumor Program

Clinical Director: Linda M. Farkas, MD

Pathology: Antonia Sepulveda, MD, PhD

Gyne-oncology: Joseph Kelley, MD

Genetic Counselors: Darcy Thull, MS, CGC

Research: Anthony Baum, PhD, Jian Yu, PhD, and Lin Zhang, PhD

For more information:

UPMC Hereditary Colorectal Tumor Program
5150 Centre Ave., 4th Floor
Pittsburgh, PA 15232
Phone: 412-692-2541
Fax: 412-692-2520

24-hour physician referral: 800-544-2500
Cancer information and referral service: 800-237-4724

Services
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 Colorectal Cancer Program and High Risk Family Registry
1600 Divisadero Street Box 1693
Hellman Bldg. Rm C415E
San Fransisco, CA 94143-1693
(415) 885-7481
Fax: (415) 885-3787
Brian.Allen@ucsfmedctr.org or Peggy.Conrad@ucsfmedctr.org 

Services
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.

Person's 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
Fax: 713-794-4421
Email: ccg@mdanderson.org 

Services
As a national registry, we are linked with co-operative groups throughout Brazil. Our mandate is to gather and organize data produced by each group. Services include: genetic counseling; genetic testing, specifically microsatellite instability testing for risk cases; MLH1 and MSH2 sequencing; and education.

For more information:
Raul Cutait, MD
Rua Adma Jafet 91
Sao Paulo, SP, Brazil
CEP 01308-050
Telephone/FAX: 55 11 214 5277
Email: RBCCRH@uol.com.br 

Services
In 1996, the Section of Colorectal Surgery founded a register called Pro.Can.He. with the main goal of collecting data of patients with family background suggesting hereditary cancers including HNPCC, FAP, gynecologic, breast and skin cancers. Regarding HNPCC, the register has currently 24 pedigrees fulfilling the Amsterdam's criteria by proband reference and 1 additional family with confirmation by pathology. In 1998, with the help of Dr. Henry T. Lynch from Creighton University and Dr. Päivi Peltomäki from Ohio State University, we began studies to identify germ-line mutations. Currently the register offers:

1.- Education for physicians and health-care professionals.
2.- Genetic counseling for patients and their families
3.- Prevention and treatment guidelines for patients and individuals at high risk.

For Information in Spanish, please, visit our Web site.

For more information:
Carlos Vaccaro, M.D.
Guayaquil 226, 7B (1424) Cap. Fed. Argentina
Fax: (54-11) 4958-2200
E-Mail: cvaccaro@hitalba.edu.ar 

Services
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:
Mount Sinai Hospital
600 University Avenue
Suite 1157
Toronto, ON M5G lX5
Website: www.mtsinai.on.ca/familialgican 

Services
Goal or Mission Statement for the Registry:
The goals of the Registry are to promote colorectal cancer prevention, education, timely treatment and research in the NY metropolitan community. The Registry provides colorectal cancer risk assessments based on personal and family history, and screening recommendations based on American Cancer Society guidelines. In addition, the Registry works with individuals and families with known or suspected hereditary colon cancer to identify health care providers for surveillance and treatment, and referrals for genetic counseling and testing.

Anyone with a personal or first-degree relative history of either colorectal polyps, colorectal cancer, or inflammatory bowel disease are encouraged to participate in the Registry. We also work with individuals with personal or first-degree relative history of early age onset endometrial, ovarian, biliary tract, small bowel or urinary tract cancer.

The Registry also supports an IRB approved research program focused on furthering our knowledge of genetic predisposition to colorectal cancer. Individuals with a personal history of colorectal cancer or polyps, who meet eligibility criteria, are encouraged to participate in this research project.

Coordinator: Anna M. Bennett, MPH
Director: Thomas K. Weber, MD FACS
Genetic Counselor: Myrna Ben-Yishay, MS CGC

For more information:
Anna M. Bennett, MPH
Albert Einstein College of Medicine
Jack and Pearl Resnick Campus
1300 Morris Park Avenue, Mazer 219
Bronx, New York 10461
Phone: 718-430-3427
Fax: 718-430-3099
Email: abennett@aecom.yu.edu
Website: www.montefiore.org/surgery/colorectal 

Purpose of the Registry
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:
Vicki Lyus, MS
Cancer Genetic Counselor
Bennett Cancer Center
30 Shelburne Rd., P.O. Box 9317
Stamford, CT 06904-9317
Tel: (203) 276-7693
Fax: (203) 276-5960
Email: vlyus@stamhealth.org

www.stamhealth.org/Services/colorectal.aspx 

Vanderbilt Hereditary Colorectal Cancer Registry

Services
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:
Duveen Sturgeon, RN
Registry Program Coordinator
Phone: (615) 322-1590 or (800) 340-7752
Email: duveen.sturgeon@vanderbilt.edu 
www.vanderbiltfamilycoloncancer.com 

Oregon Colorectal Cancer Registry (OCCR)

Services

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 Investigators:  Dr. Daniel Herzig and Dr. Kim Lu

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