Masonic Cancer Center

A comprehensive cancer center designated by the National Cancer Institute

Familial Cancer Registry

William C. Bernstein, M.D. Familial Cancer Registry

William C Bernstein photo header

About the William C. Bernstein MD Familial Cancer Registry

Hereditary, environmental, and chance events all can play a role in the development of cancer. In most cases of cancer, heredity is not the primary cause of the cancer. However, in some families, hereditary risk factors strongly increase the cancer risk. This is known as "hereditary" cancer. In other families, hereditary factors influence the risk of cancer to a smaller degree and this is known as "familial" cancer.

The William C. Bernstein, MD Familial Cancer Registry enrolls individuals with cancer in order to identify those families at greater risk for familial or hereditary cancers. The goal of the registry is to reduce the risk of cancer for these families by education and research pursuits.

If you have an increased risk of cancer because of your family history, you can take action to lower your risk of developing or dying from cancer.

About William C. Bernstein

William C. Bernstein, M.D., was a visionary colon and rectal surgeon, educator, and researcher. A generous donation in his name from an anonymous donor allowed this comprehensive familial cancer registry to become reality. Learn more about William Bernstein.


How to Support the Registry

To support the Registry, you can contribute online through the University of Minnesota Foundation website, or call 612-624-3333 or 800-775-2187.

Registry Goals
  • Identify and follow people at risk for familial cancer in Minnesota and refer them to systems of care in order to prevent cancer when possible, or to detect it early if it does occur.
  • Systematically monitor familial cancer in Minnesota at the population level.
  • Promote statewide access to high-quality genetics services including genetic tests that may influence treatment or surveillance decisions
  • Promote systems of familial cancer care that are adequate, appropriate, available, accessible, and complete.
  • Educate patients and families with familial cancer about familial cancer.
  • Educate providers who care for familial cancer patients and families about familial cancer.
  • Increase knowledge about familial cancer and hereditary risk through research.
  • Evaluate and improve systems and services that provide care for familial cancer
Steering Committee, Working Groups and Affiliates

The Registry is lead by Principal Investigators Robert D. Madoff, M.D., and Timothy Church, Ph.D. Dr. Madoff is director of the Registry and a professor in the University of Minnesota Medical School's Department of Surgery. Dr. Church leads the Registry's Health Studies working group. He is a professor in the University of Minnesota School of Public Health's Division of Environmental Health Sciences.

Steering Committee

Timothy Church, Ph.D., Professor and Director, Health Studies Section
Melissa Geller, M.D., Assistant Professor, OB/GYN
Richard King, M.D., Ph.D., Professor and Director, Institute of Human Genetics
Jane Korn, M.D., M.P.H., Medical Director, HPCD Division, Minnesota Department of Health
Robert D. Madoff, M.D., Director and Principal Investigator
David Rothenberger, M.D., Professor, Colon and Rectal Surgery
Douglas Yee, M.D., Director, Masonic Cancer Center, University of Minnesota

Working Group Members and Affiliates

Administrative
Robert D. Madoff, M.D., Director and Principal Investigator
Timothy Church, Ph.D., Director of Health Studies Section
Thomas Gilliam, R.N., M.B.A., Administrative Director
Kristin Baker Niendorf, M.S., C.G.C., Coordinator

Genetics
Anna Leininger, M.S., C.G.C.,Technical Consultant
Mary Ahrens, M.S., C.G.C., Genetic Counselor
Kristin Baker Niendorf, M.S., C.G.C., Coordinator

Bioinformatics
Mindy Geisser, Senior Research Fellow

Health Studies
Deb Engelhard, Coordinator
Jill Cordes, R.N., Coordinator
Jim Fisher, Fiscal Coordinatorr

Tissue Procurement
Amy Skubitz, Ph.D., Lab Medicine and Pathology
Sheilah Hurley, M.A., Associate Program Director

Clinic Liaison
Melissa Geller, M.D., Assistant Professor, OB/GYN
Melanie Reitz, OB/Gyn and Women's Health
Kelli Simmons, R.N.C., Liaison, Colon and Rectal Surgery

 

Hereditary cancer risk assessment and counseling providers

The people listed are genetic counselors unless otherwise noted. To locate a provider outside of Minnesota, visit the National Society of Genetic Counselors' Web site.

Abbott Northwestern Hospital
Virginia Piper Cancer Institute (39503)
800 E. 28th Street
Minneapolis, MN 55407
(612) 863-0227

CentraCare Women & Children
CentraCare Familial Cancer Program
1900 CentraCare Circle, Suite 2300
St. Cloud, MN 56303
(320) 654-3655

Children's Hospital - Minneapolis
2525 Chicago Ave.
Minneapolis, MN 55404
(612) 813-6635 7240 (pediatric only)

Gundersen Lutheran Health System
Hereditary Cancer Service

EB1-001; 1900 South Ave.
LaCrosse, WI 54601
(608) 775-3995 OR
(800) 362-9567 x 53995

HealthEast Cancer Care
Cancer Genetics Clinic
St. John's Hospital
1575 Beam Ave.
Maplewood, MN 55109
(651) 232-7888

Mayo Clinic
Familial Cancer Program
Department of Medical Genetics, E7B
200 1st St. SW
Rochester, MN 55905
(507) 284-8004 or 266-2147
Phone: (507) 538-7229 FAX: (507) 538-7234

Humphrey Cancer Genetics Program
North Memorial Health Care
Hubert H. Humphrey Cancer Center
(Robbinsdale, Fridley & Plymouth locations)
3300 N. Oakdale, Plaza 100
Minneapolis, MN 55422
(763) 520-3813 or 520-3815

Park Nicollet Clinic Cancer Center
3800 Park Nicollet Blvd
St. Louis Park, MN 55416
952-993-3248

Roger Maris Cancer Center
Cancer Risk Assessment Program
802 4th St. N.
Fargo, ND 57122
(701) 234-2448 6292

Regions Hospital
Cancer Genetics Program
640 Jackson St.
St. Paul, MN 55101
(651) 254-3572

Mercy & Unity Hospitals
Cancer Genetics Program
550 Osborne Road NE
Fridley, MN 55432
(763) 236-4645

St. Mary's Duluth Clinic
400 E. Third St. M3C50
Duluth, MN 55805
(218) 786-3012

Sanford Health
Cancer Risk Assessment/Genetic Counseling
1500 W. 22nd St., Suite 401
Sioux Falls, SD, 57105
(605) 328-7700

University of Minnesota Medical Center, Fairview
Familial Cancer Clinic

FUMC 485; 420 Delaware St. SE
Minneapolis, MN 55455
(612) 625-2134 or (612) 625-5411

Fairview Southdale Medical Oncology
6363 France Avenue South
Edina, MN 55435
(952) 836-3645

Recommended familial cancer resources
Family Health History Resources

Minnesota Family History Tool Kit is a detailed primer on collecting and interpreting your family health history, including collecting information from medical institutions, public records, and online databases. The resources are designed to be Minnesota-specific.

Additional resources:

Cancer Genetics Service Providers
Information about Familial Cancer for Health Care Providers and Researchers 
  • Online Mendelian Interitance in Man (OMIM) is a comprehensive, authoritative, and timely compendium of human genes and genetic phenotypes. OMIM focuses on the relationship between phenotype and genotype. It is updated daily and the entries contain copious links to other genetics resources.
  • National Cancer Institute (NCI): The National Cancer Institute coordinates the National Cancer Program, which conducts and supports research, training, health information dissemination, and other programs with respect to the cause, diagnosis, prevention, and treatment of cancer, rehabilitation from cancer, and the continuing care of cancer patients and the families of cancer patients.
  • National Comprehensive Cancer Network (NCCN) develops and makes available the Clinical Practice Guidelines in Oncology™ that are updated frequently. The primary goal of all NCCN initiatives is to improve the quality, effectiveness, and efficiency of oncology practice so patients can live better lives.
  • GeneTests includes information on genetic tests for cancer and other conditions, expert reviews on genetic conditions, and a directory of genetic clinics and professionals in the United States and internationally.
  • GeneReviews are expert-authored, peer-reviewed, current disease descriptions that apply genetic testing to the diagnosis, management, and genetic counseling of patients and families with specific inherited conditions.
 Cancer Survivorship
  • The Cancer Survivorship Program at CDC works to help people in the United States who live with, through and beyond cancer. The site includes resources for individuals, families and health professionals.
  • American Cancer Society has information on what it means to be a cancer survivor, including the online Cancer Survivors Network that provides support, shared experience and fellowship with others who have been affected by cancer.
Advocacy Organizations
  • Minnesota Ovarian Cancer Alliance (MOCA) was founded by ovarian cancer survivors to fund ovarian cancer research in Minnesota, raise awareness of the disease and to provide support to women with ovarian cancer and their families.
  • Facing Our Risk for Cancer Empowered (FORCE) exists to improve the lives of individuals and families affected with hereditary breast and ovarian cancer. The Minnesota Network for FORCE has information on local efforts to provide information, support, awareness, and advocacy for individuals and families affected by hereditary breast and ovarian cancer.
  • Susan G. Komen for the Cure works to save lives, empower people, ensure quality care for all and energize science to find the cures for breast cancer.
  • Colon Cancer Coalition's mission is to make colon, colonoscopy and colorectal every day language, help to overcome fear and decrease deaths from colon cancer.
  • American Cancer Society (ACS) provides information and services to people and families affected with cancer and funds cancer research.
General Cancer Resources
  • Cancer Information: collection of links to cancer information and to information about patient care and clinical trials
  • Minnesota Cancer Alliance is a coalition of health organizations, community groups, and volunteers that created and is putting into practice the statewide Cancer Plan Minnesota. .
  • Minnesota Cancer Facts and Figures is updated annually and is a product of the Minnesota Cancer Surveillance System at the Minnesota Department of Health, the Minnesota Cancer Alliance, and the American Cancer Society.
Additional Resources
  • ©2013 Regents of the University of Minnesota. All rights reserved.
  • The University of Minnesota is an equal opportunity educator and employer
  • Last modified on March 8, 2013