One way that Enroll-HD is unique is that it is designed to be a public resource shared by the whole HD research community. Enroll-HD is a global multi-center observational study of Huntington’s disease (HD). It tracks people over the long term who either have HD or who are at risk, to monitor how the disease appears and changes over time in different people. https://www.enroll-hd.org/welcome/
Most studies are restricted, so that only the researchers who collect the information can get access to it to learn about the disease. Enroll-HD uses high standards to protect the privacy of participants, so that anyone with a valid research project can get access to data with all potentially identifying information removed. https://www.enroll-hd.org/
100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.