HDSA Centers of Excellence for the Treatment of Huntington's Disease

About Huntington's Disease (HD):

HD is an autosomal dominant genetic disorder that affects movement, behavior, and cognition. The disease is directly inherited from a parent that carries the gene. The disease strikes in mid-years, generally between the ages of 35 and 50. It is characterized by a decline in thinking abilities, mood and behavior disturbances, and eventually abnormal limb and trunk movements called 'chorea'. The course of the disease is 15-25 years. There are currently approximately 30,000 people affected in the United States, with another 150,000 at risk. There is no known cure.

What is an HDSA Center of Excellence?

HDSA Centers of Excellence serve as a focal point for care of people and families affected by HD. Their mission is to provide expert care, participate in research initiatives for the care and cure of HD, and educate the community and care providers. HDSA Centers of Excellence are being established at strategic academic institutions throughout the United States to complete an HD network of resources and referrals. There are currently 16 centers across the United States, with plans to expand the program to 25 by the year 2005.

How Do You Become an HDSA Center of Excellence?

Potential programs must meet a rigorous standard of established criteria to apply for funding as an HDSA Center of Excellence. Applications are reviewed each year by a national panel of experts. Sites are chosen on their proven ability to meet the needs of the HD population as well as their ability to expand services. The Core Services offered by the HDSA Centers of Excellence are:

• Medical Treatment by Neurologists specialized in Movement Disorders
• Speech, Physical, and Occupational Therapy
• Genetic Counselors and Genetic Testing Services
• Trained Social Workers available to assist families
• Network of Regional Referrals for HD care
• Opportunities for participation in HD research

Where are the HDSA Center of Excellence Programs?

Baylor College of Medicine

Houston, Texas

Colorado Neurological Institute

Englewood, Colorado

Emory University School of Medicine

Atlanta, Georgia

Hennepin County Medical Center

Minneapolis, Minnesota

Johns Hopkins University

Baltimore, Maryland

Massachusetts General Hospital/Tewksbury Hospital

Boston, Massachusetts

North Shore University Hospital

Manhasset, New York

Ohio State University

Columbus, Ohio

University of Alabama at Birmingham

Birmingham, Alabama

University of California Davis Medical Center

Sacramento, California

University of California San Diego

La Jolla, California

University of Iowa Hospitals

Iowa City, Iowa

University of Rochester

Rochester, New York

University of Virginia

Charlottesville, Virginia

University of Washington Medical Center

Seattle, Washington

Washington University Medical Center

St. Louis, Missouri

HDSA Center of Excellence at the University of California Davis Medical Center

Vicki L. Wheelock, MD

Director

Teresa L. Tempkin, RNC, MSN, ANP

Co-Director

The foundation for the HDSA Center of Excellence at the University of California Davis Medical Center began in 1996, when the Department of Neurology started a GHPP clinic and joined the Huntington's Study Group. Since that time, programs, services and personnel have been expanded to its current designation as an HD Center of Excellence.

Huntington's Disease Programs and Services at the HDSA Center of Excellence at the University of California Davis Medical Center

Clinical Services:

We offer three (3) clinics a month designated for HD care. Two clinics are on the UC Davis Medical Center campus, and one clinic per month is held at Kaiser in Sacramento. Kaiser and UC Davis have combined aspects of their Movement Disorder clinics to provide broader access and more comprehensive services for HD families in Northern California.

All specialty and referral services are available through the HD clinics. The HD multi-disciplinary team is headed by Dr. Vicki Wheelock, and clinic patients are seen by the Nurse Practitioner, a Physical Therapist and a Social Worker. An HD Team Psychiatrist was added July, 2001. Occupational Therapy, Speech Therapy , Home Health, Hospice, and Nutrition Services are available by consultation. A full array of medical specialties are available on the Medical Center campus, as well as in hospital care when needed.

HD Research:

UC Davis has been a participating member in the Huntington's Study Group (HSG) since 1996. The HSG is an international consortium of scientific and academic centers collaborating on HD research. The HD studies currently being conducted at UC Davis are:

Longitudinal UHDRS Data Base:

This is a multi-site observational study that records the motor, psychiatric, functional, behavioral and cognitive features of Huntington's Disease. Data from participants is submitted from HSG sites world-wide. Clinical and bench scientists use this data base in their research to improve care and work towards a cure.

PHAROS:

This is a prospective observational study for people who are unaware of their gene status, but are at-risk for development of Huntington's Disease. This study allows us to observe the features of the disease as it develops, and will provide the framework for subsequent treatment trials for those at-risk.

PREDICT-HD:

This prospective observational trial looks at brain imaging techniques and the diagnosis of HD features in people who are gene positive, but currently asymptomatic.

Motor, Psychiatric and Behavioral Features of Institutionalized People with HD:

This is was a retrospective study conducted by Dr. Wheelock and Terry Tempkin using the UHDRS data base to determine predictors of institutionalization for people with HD. The results of this research were presented at the American Academy of Neurology meeting in October, 2000.

Genetic Testing and Genetic Counseling:

UC Davis and Kaiser offer genetic testing and counseling services for those people at-risk for HD who are interested in knowing their gene status. The program has a multi-disciplinary team approach and follows the recommendations of HDSA and the National Association of Genetic Counselors.

HD Information and Referral:

The HDSA Center of Excellence at the University of California Davis Medical Center maintains an HD help-line. A dedicated phone line gives direct access to the Nurse Practitioner in the HD clinics. Over 500 calls are received each year. This service gives families in the HD community direct access to the people who can assist them with their needs.

Nursing Home Outreach Program:

Some HD families need nursing home placement. The Nurse Practitioner and Social Worker are available to assist families with placement and developing a nursing home plan of care. The HD team is available for in-service programs in area nursing homes, and will expand the nursing home program to include routine visits to HD patients that are institutionalized.

The HDSA Center of Excellence at the University of California Davis is grateful for the support provided by the Roberson and Pue Foundations.