To provide quality HD care, services, and education to patients, families, and community professionals; to increase awareness of HD in the community; and to conduct research contributing to future treatments or a cure for HD.
The GHPP Clinic is staffed by a multidisciplinary team of medical professionals who specialize in the diagnosis and treatment of persons affected with HD. The team includes neurologists, a psychiatrist, clinical nurse specialist, neuropsychologists, a social worker, center coordinator, and dietician. Clinic visits include complementary scheduling for physical therapy, occupational therapy, speech and swallowing evaluations, mobility equipment referrals, and other recurring services.
The HDCRC provides services that address issues related to the care of individuals with HD. Assistance may include: general information and referrals, education and educational materials, support groups, genetic counseling, placement information, in-service trainings to care facilities upon request of family member or care facility.
The HDCRC assists individuals at-risk for inheriting HD, who have made a decision to be tested or are contemplating being tested for the HD gene mutation. Individuals are screened and counseled for issues such as: 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.
The goals of our professional education program are 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, which lie outside of their traditional fields. Consultation and educational opportunities are provided to community professionals caring for patients and families affected by HD.
The HDCRC is active in clinical HD research. Participants include those affected with HD, individuals at-risk for HD, family members or friends, and normal control subjects. Studies include clinical drug trials, observational trials, neuropsychological studies, and genetic research.
Our Center News
UCSD Represented at Annual Huntington's Society Group MeetingUC San Diego HDSA CoE researchers submitted three posters to the 2020 HSG Meeting. The posters comprised three studies involving the cognitive and motor assessments given to patients at the HDCRC and at our GHPP clinic. One study investigated the ability of the Mini-mental State Examination and the Montreal Cognitive Assessment to track cognitive progression in HD. Another tested the proficiency of the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS) in assessing cognition in patients with, and at-risk, for HD. A third study confirmed the accuracy of an algorithm called the Composite Unified Huntington’s Disease Rating Scale (cUHDRS) to evaluate a patient’s clinical status using motoric, behavioral, and cognitive assessment scores.
UCSD Completes Enrollment for Triplet Study
San Diego HDSA CoE has completed the enrollment process for the Triplet
observational study, called Shield-HD, which is investigating how HD
progresses over time. The intent is to use the collected data to further
our understanding of how mutant huntingtin protein affects the brain in
at-risk patients. This study is an important step in preparing
researchers to take the leap into genetic modification of the mutant
huntingtin gene. Participating in this study will help researchers
narrow down the timeline during which patients will best respond to gene therapy.
Vaccinex SIGNAL Trial Update
Vaccinex has released the results of its multi-year phase 2 SIGNAL trial that aimed to study the efficacy and safety of the drug Pepinemab (VX 15/2503). The compound targets a protein that recruits inflammatory cells to sites of damage. By binding and blocking that protein, researchers had hoped that Pepinemab might limit brain tissue degeneration (a characteristic feature of Huntington's progression) and help slow the decline of early-manifest patients. While the trial did show Pepinemab may have a positive effect on delaying cognitive decline, the study was unable to show clinical significance as it missed both of its co-primary endpoints. Researchers believe that a larger group of patients and more tailored endpoints may be able to distinguish Pepinemab as a beneficial drug for early-manifest patients. Thank you to all of the patients who participated here at UCSD and across the study.
UCSD Hits 1-Year Mark in Generation HD-1 Trial
UC San Diego HDSA CoE was chosen over a year ago as one of the 20 sites in the US to administer the ROCHE Phase 3 clinical trial drug RG6042 using an antisense oligonucleotide to target mutant huntingtin protein. Currently, 17 patients are enrolled in the trial at our site and almost all have hit the half-way point in the study! We will continue supporting these patients throughout the next year to the conclusion of this important phase 3 clinical trial.
WAVE Precision-HD2 Trial Update
UC San Diego HDSA CoE has now enrolled several patients in the WAVE Life Sciences PRECISION-HD2 clinical trial. This trial focuses on a new drug targeting mutant huntingtin protein that is part of a novel generation of drugs employing antisense oligonucleotides.
UCSD Named Center of Excellence
UC San Diego is one of 47 centers nationwide to receive the prestigious designation of Center of Excellence by the Huntington's Disease Society of America, which recognizes centers for their elite multidisciplinary approach to Huntington’s disease care and research. This is the 17th consecutive year that UCSD has earned the HDSA Center of Excellence designation.
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