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 Center of Excellence is Enrolling Participants for our KINECT-HD Neurocrine Study
Our site is currently looking for participants to enroll in our KINECT-HD Neurocrine study which is investigating the efficacy of the drug Valbenazine to reduce HD associated chorea. Valbenazine has been studied and approved by the FDA to treat tardive diskynesia but is undergoing further review to ensure its safety in Huntington's patients. The study is done over a 4 month period where we will be tracking your dosing as well as cognitive and motoric progression after starting the medication. Please call or email us as soon as possible if you're interested in finding out if you qualify for this clinical trial!
The HDCRC is on Social Media
UCSD Huntington's Disease Clinical Research Center has recently become much more active on Twitter and Facebook! While we try our best to update this webpage regularly, we fell that we're able to reach more people through social media as compared to here. While this webpage continues to serve as a great place to read in more depth about our clinical trials as well as to access important resources and information, our social media channels are more frequently updated so that we can get details out to our community much faster. Follow us on Twitter @ucsd_hdcrc and find our page on Facebook by searching for the UCSD HDCRC!
Prilenia's PROOF-HD Starting Here at UCSD HD Research Center
Prilenia Therapeutics' PROOF-HD phase 3 clinical trial has begun its first round of baseline visits here at UC San Diego's CoE. The PROOF-HD study aims to study the efficacy of the drug Pridopidine to confirm pervious findings that pridopidine demonstrated maintenance of functional capacity in early HD patients. The trial is a randomized, double-blind study, meaning that if the trial meets its predetermined clinical end points, Prilenia may try to put the drug to market quickly after the conclusion of the study. The year and a half long trial will conclude just before the summer of 2022. We're delighted to be one of the first centers to begin the trial and are looking forward to seeing how the trial drug preforms in the coming months.
UC San Diego HD CoE Will Complete Triplet Study Soon
The Triplet study site here at UCSD will be completing the observational study soon. Shield-HD which is investigating how HD progresses over time is to be used to collect data to further our understanding of how mutant huntintin 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 huntintin gene. Thank you to our study participants who already completed the study and those who are soon to be finished!
Generation HD-1 Trial Heading Toward its Last Quarter
The Generation HD-1 clinical trial, investigating the clinical trial drug RG6042, an antisense oligonucleotide, will soon be entering its last quarter. We have 16 patients currently enrolled here at our Center of Excellence, the first of which will be completing the trial at the end of this upcoming summer! As always, we will continue to support and monitor our trial patients during these last few months.
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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