Enroll-HD is a worldwide observational study of Huntington’s disease, meaning that it doesn’t involve taking a drug but tracks peoples’ health and behavior over time. There are more than 20,000 participants globally, who visit hundreds of sites and all undergo the exact same evaluations yearly. Anyone from an HD family can participate, regardless of gene status or risk. It is a resource for the entire HD community, including patients, families, patient advocates, clinicians and other healthcare professionals, researchers, and anyone else who has a connection to HD. The study is enabling scientists to identify new drug targets, helping pharmaceutical companies to recruit participants quickly and efficiently for their trials, and moving the field towards an improved understanding of HD and quality care. Learn more by visiting www.enroll-hd.org.
Gene Veritas: Book Review
HD blogger, advocate, and HD gene carrier “Gene Veritas” blogs frequently about happenings in HD research, advocacy, and medicine. His latest post is a review of Dr. Thomas Bird’s recent book, Can You Help Me? Inside the Turbulent World of Huntington Disease. Veritas writes, “With non-technical, limpid prose, Dr. Bird tells the full story of HD’s wide-ranging medical, socioeconomic, and legal implications through a series of poignant vignettes, based on hundreds of HD cases.” The book was published by Oxford University Press in 2019.
