San Diego Chapter
- The HDSA Center of Excellence for Family Services and Research at the University of California, San Diego, is dedicated to serving the needs of those affected by HD. Its mission is to provide quality HD care, services, and education to patients, families, and community professionals; to increase awareness of HD; and to conduct research contributing to future treatments or cures.
The core of the Center of Excellence (COE) is UC San Diego’s Huntington’s Disease Clinical Research Center (HDCRC), which has been serving the San Diego community for over 25 years. HDSA designated the HDCRC a Center of Excellence in 2001. It is one of 21 COEs located in the U.S. The Center is recognized for the expertise of its multi-disciplinary team of healthcare professionals and for its personal and compassionate approach to caring for those affected by Huntington’s disease.
In addition to providing clinical care, the COE promotes innovative research methods to gain a better understanding of the causes, clinical features, and treatments for Huntington’s disease. As a Huntington Study Group site, the COE collaborates with researchers from around the world, conducting treatment trials and seeking ways to prevent, treat, and ultimately eliminate the disease. The director of the Center is Jody Corey-Bloom, M.D., Ph.D., recognized as one of San Diego's top physicians.
The COE provides the following services:
Medical Services, Genetically Handicapped Persons Program Clinical (GHPP). The GHPP holds a monthly clinic held at the UCSD Medical Center’s Neurology Outpatient Clinic. It is staffed by a team of medical professionals who specialize in the diagnosis and treatment of HD, including a psychiatrist, clinical nurse specialist, social worker, dietician, neurologists, and neuropsychologists. There are complementary sessions for physical therapy, occupational therapy, speech and swallowing evaluations and other recurring services.
Family and Caregiver Support. The COE helps families and caregivers by providing services, including general information and referrals, education and educational materials, support groups, genetic counseling, placement issues, in-service training in care facilities upon request of a family member or care facility. Along with the Southern Caregiver Resource Center, the COE staff facilitates a HD support group which is available for caregivers, individuals at-risk for HD, and individuals affected with HD.
Confidential Genetic Testing and Counseling. The COE assists individuals at risk for HD who have made a decision to be tested or are contemplating being tested for the defective HD gene. Individuals are screened and counseled for issues such as the ability to cope with positive or negative results, relationships with family and friends, insurance planning, marriage and/or family planning, legal issues, career decisions, and support system.
Hispanic Outreach. The COE reaches out into the Hispanic community to provide general information and referrals, educate families about the signs and symptoms of HD, translate educational materials into Spanish and provide them to the families and caregivers, and assist in dispelling myths about HD.
Facility/House Visit Outreach. Because many HD patients are home-bound, live outside of our immediate area, and have difficulty obtaining transportation, we provide facility/home visits to our patients.
Professional/Community Outreach. We seek to expose healthcare professionals, police officers, school counselors, social workers, and other community members to a multidisciplinary approach to the care and needs of HD patients, to broaden their perspective, and to make them aware of the problems in caring for patients with HD.
Brain Bank. The COE maintains a brain bank for HD research. The bank is a depository for brain tissue that has been donated for research. An important aspect of this research is the postmortem analysis of brain tissue, through which we can examine the changes in the brain and correlate them with motor, cognitive, and behavioral changes that occur in HD.
Research Opportunities. We are active in local and national HD research studies. There are numerous opportunities to help individuals and families with HD. Participants include those affected with HD symptoms, individuals at-risk for HD, family members or friends. Many members of our HDCRC staff are also members of the Huntington’s Study Group, which is a multinational group of investigators and scientists who seek to develop new treatments for HD. Studies include clinical drug trials, observational trials, neuropsychological studies, occulomotor studies, functional MRI studies, and genetic research