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 of individuals with HD, as the intensity of care needs increase, the vast majority will transition to long-term care facilities. In this situation, many family caretakers continue to advocate for and provide care.
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, what about LEGATO and laquinimod? What are the data that led to this drug being tested in HD?
Treatment Guidelines for Huntington's: Who needs them?
Posted by LaVonne Goodman M.D.
During my years as an internal medicine physician, I have used standard of care guidelines for my patients with conditions like diabetes and heart disease. Guidelines are developed by experts in each disease who
translate clinical trial evidence and/or expert experience into recommended care patterns
for use in medical offices or at the bedside. When followed, guidelines have been central to improving the
quality of care provided by all physicians whether they are specialists or