October news from the Enroll-HD community

In the Enroll-HD Newsletter of Autumn 2016 you can read current updates from the global Enroll-HD community. You will find the entire newsletter here

In the newsletter you can read how Astri Arnesen, the president of EHA, and Svein Olaf Olsen talk openly about one of the most private decisions for HD families: being tested. They tell their story as husband and wife, living with HD, at page 1-3.

You can also read about Enroll-HD in its fifth year. After four years, about 80 % of the original participants still participate in the study. And as of September 1. 2016, the study had 11 324 people participating. This is a pretty good retention rate, but what measures can be done to keep people coming back for clinic visits? Read about them at page 3-5.

You will further find an interview with Maria Ramos-Arroyo (page 6-8), who has been a part of HD research from the start of her career. She is now head of the medical genetics department at the Complejo Hospitalario de Navarra in Pamplona, Spain.

Further Researcher Rachel Harding address the problem that medical research can be intensely competitive and surprisingly secretive. Harding wants to make research that is still in progress public – so that researchers can learn from each other and speed up the research process. Read the article at page 8-9.

You will find an interview with Sylvain Chouinard, a neurologist and co-director of the André Barbeau Movement Disorders Unit at Montreal’s major university hospital. Chouinard’s clinic have recruited 500-600 HD patients to participe in Enroll-HD. Read why he got so many participants and how he does his research at page 10.