Older Posts

  • Psychologic Distress/Psychiatric symptoms and Huntington's Disease

    Psychological distress and psychiatric symptoms are terms that we can use to describe a range of situations that occur in Huntington's disease (HD) that are emotionally troubling and have negative impact on how we function as individuals and families. And we certainly have more than our share of...

  • Huntington's Disease Care

    There have been a number of studies about the impact and burden of Huntington's disease (HD) on both those affected and their family carers. Though there are many other factors, the major recurring theme boils down to "lack of care". This includes lack of access to HD subspecialty medical care, lack...

  • Highlights from HSG 2015

    The Huntington Study Group (HSG) hosted more than 400 attendees from around the world that included expert clinicians, researchers, and coordinators of clinical studies at their annual meeting in late October. Rounding out this group were representatives from several drug companies, and most...

  • Antipsychotics and Tetrabenazine: More Rapid Progression of HD?

    In a recent publication in the Journal for Huntington's Disease, Tedroff and collaborators report that antidopaminergic (antipsychotic and tetrabenazine) drugs were associated with more rapid progression of Huntington's disease. Any study showing a factor associated with more rapid progression is...

  • Pridopidine and the Hope for HD Neuroprotection

    In a new laboratory study from Italy, investigators have reported a very exciting result for Huntington's (HD). Pridopidine, the drug presently in clinical trial for HD was shown -- not just to treat motor symptoms -- but also to provide neuroprotective benefit in a genetic mouse model of...

  • Informal (Family) Caregivers for HD

    Care is described as informal when provided by unpaid family members or friends, and formal when caretakers are paid. Though a small subset of individuals with HD are cared for in the home through end of life, formal paid home healthcare services are frequently utilized. However the vast majority...

  • What is Laquinimod? Why Test it in LEGATO for HD?

    In a recent New York Times article, Dr. Siddhartha Mukherjee, a cancer expert from Columbia University wisely recommended that potential clinical trial participants ask their investigators "Why is the trial being done?" And "What were the data that led to the clinical trial in the first place?" So,...

  • PRIDE-HD: Why We Should Bother

    Recruitment is not going well for PRIDE-HD, an important clinical trial now enrolling for Huntington's disease (HD). Why is this? Some think "why bother", particularly when testing a drug they may perceive as a failure in earlier trials. For some others, the trials may seem to too hard, too long,...

  • Aggression in Huntington's Disease

    A recent article reports that aggression is common in individuals with Huntington's disease. Authors report rates of aggressive behaviors between 22% (for clinic patients) and 66% (for hospitalized patients) among individuals with HD. What do they mean by aggression, and how should we interpret...

  • Auspex Announces (very) Positive First-HD and ARC-HD Trial Results

    Auspex Pharmaceuticals announced quite positive results for their drug SD-109. This drug treats chorea with many fewer side effects associated with tetrabenazine. And most important it improved quality of life.

  • 2014: A Yin-Yang year for HD

    Particularly during this past year, living with Huntington's disease (HD) has been full of its ups and downs. First there was the hope in ongoing clinical trials of both coenzyme Q-10 and creatine. Then there was sadness and fear that came with their failures. And now hope is springing again for...

  • Bummed

    "Bummed" was what this author felt after the recent announcement of the failed trial of creatine for Huntington's disease (HD). We can put some positive spins on recent trial failures; we have learned how to run large clinical trials, we can learn from negative outcomes, and best of all hundreds of HD...

  • Gastrointestinal Problems in Huntington's disease

    Human study shows that inflammation in the esophagus (swallowing tube) and stomach is common and occurs more frequently in Huntington's disease (HD) as it progresses. Study also shows that individuals often do not complain. Lower GI function has not been investigated in individuals with HD, but if...

  • Pathological Laughter or Crying

    Pathological laughter or crying (shortened to PLC) refers to laughter or crying that is deemed socially inappropriate for the situation. Often the individual will laugh or cry spontaneously for no apparent reason. The abnormal behavior is one of impaired emotional expression. Can this be a symptom...

  • Swallowing difficulty and Huntington's disease

    Dysphagia, or difficulty swallowing, is a big problem in Huntington's disease (HD), but surprisingly little is known about it. It is not known how early it begins, or how symptoms and swallowing dysfunction progress over the stages of HD. Further, even less is known about techniques that might...

  • Auspex SD-809 Interim Analysis Data Release

    A recent press release from Auspex Pharmaceuticals reported on an interim analysis from their ongoing ARC-HD trial that switching from tetrabenazine (Xenazine) to SD-109, resulted in equal control of chorea in Huntington's disease. SD-109 is a chemically modified form of tetrabenazine that allows...

  • PGD for the Prevention of HD

    For more than a decade, couples at risk for Huntington's disease have had the option to conceive an unaffected child by utilizing the reproductive process of preimplantation genetic diagnosis (PGD). If PGD became common practice in HD, it could eliminate the majority of disease for the next...

  • Caregiving: A Risky Profession?

    Caregiving for a person with later stage Huntington's disease is a loving long-term commitment that can bring rewarding fulfillment but sometimes may be hazardous to your health. Though some later studies do not confirm, an early often quoted study suggested that long-term caregivers who report...

  • What is Cysteine? And what does it have to do with Huntington's Disease?

    In a paper published this week in the prestigious journal Nature, Dr. Solomon Snyder and colleagues reported promising results in cell and mouse models of Huntington's disease (HD). They showed that these models were deficient in both (1) cysteine, one of the amino acid building blocks in...

  • Raptor's Clinical Trial for Cysteamine in Huntington's: Cause for Optimism?

    Raptor Pharmaceutical Corp. announced some positive (though preliminary) results from the 18-month review of their CYST-HD Phase 2/3 clinical trial testing a cysteamine drug for Huntington's disease (HD). They reported slower progression of motor impairment in those participants who had received...