Enroll-HD Congress 2018
May 20th - 22nd
Quèbec City, Canada
May 20th - 22nd
Quèbec City, Canada
Do you know someone who
has Huntington's disease?
You're not alone.
We're in this together.
has Huntington's disease?
You're not alone.
We're in this together.
Third Enroll-HD periodic
dataset now available to interested
researchers.
dataset now available to interested
researchers.
Join the worldwide effort to
advance Huntington's
disease research.
advance Huntington's
disease research.
HD Research News 
- Oct 19, 2018 HDSA FAQ on the Roche/Genentech RG6042 program
- Oct 10, 2018 Kids sometimes get Huntington’s disease too
- Sep 17, 2018 Roche announces details of its 'pivotal' huntingtin-lowering study
Featured Stories from Enroll! - the Enroll-HD newsletter
HD will get new attention across Latin America in 2013, as Rio de Janeiro hosts the World Congress on Huntington’s Disease and...
People often talk about HD in black and white terms: You either have the gene or you don’t. If you do, people...
Erika Bjorklund is in the midst of what anybody would call a busy summer. She’s just finished her second year of medical...
Some of the most promising therapies for HD are based on the same idea: reducing the amount of mutant huntingtin in brain...
When a potential new treatment is tested for the first time in people, everyone hopes for the best—that this will be the...
As of Thursday 14 December, 2016, a new batch of data from Enroll-HD is now available through the website. This is the...
About 14 years ago, the Cystic Fibrosis Foundation (CFF) began analyzing data from its national registry of people with the disease in...
Enroll-HD is now up and running in Ireland, the first time the country has joined a large-scale international study of the disease...
How do you say “a big job” in Finnish, Portuguese and Dutch? For a global project like Enroll-HD, making sure everything is...
Medical research can be intensely competitive—and, as a result, surprisingly secretive. Researchers can be reluctant to share data or describe what they’re...
Many Enroll-HD sites are located at academic medical centers—institutions with medical schools and teaching hospitals, and often physically linked to elite universities....
Maria Ramos-Arroyo has been part of HD research from the beginning of her career. A member of the team that originally discovered...
In 2008, Shelly Meadows got the news that her uncle had just been diagnosed with HD, a disease she knew nothing about....
For Enroll-HD, signing up new volunteers is only the start. The most valuable information gathered by the study will come from collecting...
As Enroll-HD gets up and running in Canada, one of the leaders in the HD community explains how the study will take...
Chouinard is a neurologist and co-director of the André Barbeau Movement Disorders Unit at Montreal’s major university hospital, the Centre hospitalier de...
As a coordinator for the Enroll-HD site in Manchester, UK, Dawn Rogers works with people who have signed up to participate for...
Clinical neurologist Michael Orth, MD, PhD, knows the power of numbers. Big studies allow him to find so-called outliers—people with the HD...
In September 2013, nearly 500 people gathered in Rio de Janeiro, Brazil for the 2013 World Congress on Huntington’s Disease. It was...
Clinical trials that test new therapies usually get all the attention because they can have a fast payoff if the drug being...
In February 2014, the Huntington’s Disease Society of America officially endorsed the Enroll-HD study—the first time that the national nonprofit patient-advocacy organization...
Life for a young person in an HD family can be tough. At home, there may be responsibilities such as helping with...
As Enroll-HD officially got underway in Latin America, medical staff from across the region convened at a workshop in Buenos Aires in...
When people in the small US manufacturing city of Rockford, Illinois began discussing what help they most needed in dealing with Huntington’s...
The first participant in Australia signed up for the study in Melbourne in August 2013. As of March 2014, the study is...
By 2015 Enroll-HD was underway on four continents, in some sites for as long as three years. With so many sites in...
In early 2013, Enroll-HD officially got underway in Latin America. The first five participants signed up at the Instituto Frenopático in Buenos...
In 2016, CHDI’s annual Huntington’s Disease Therapeutics Conference (HDTC) in Palm Springs, California brought something new and an indication of where HD...
At her first job after college at a nursing hospital in southern California, about 25 years ago, Amy Chesire met a man...
People with HD may consult with a psychiatrist, a neurologist and a psychologist for their diverse symptoms, but what they really need,...
The first test of a treatment intended to lower the amount of the protein that causes HD was administered to its first...
As of early 2015, the first wave of data from Enroll-HD is now available for researchers around the world to ask new...
Sarah Tabrizi is involved in HD at almost every level. She’s professor of clinical neurology at the National Hospital for Neurology and...
Poland was one of the first European nations to join Enroll-HD. Grzegorz Witkowski, MD, PhD, a physician at the Institute of Psychiatry...
If you don’t know your gene status, and don’t want to know, you can join Enroll-HD without finding out. You won’t be...
Making day-to-day health care better for people with HD is one of the central goals of Enroll-HD. By comparing the hundreds of...
If you are part of Enroll-HD, you may have the chance to join other clinical studies and clinical trials. The words mean...
The HD center at Columbia University Medical Center in upper Manhattan is not glamorous. The big old buildings on 168th Street are gloomy, and...
You can volunteer for Enroll-HD even if you haven’t been tested and don’t know your gene status. Sarah Weber joined Enroll-HD along...
The most complicated phase of Enroll-HD is just beginning. The European sites that are taking part in Registry began transitioning into Enroll-HD...
As anybody from an HD family knows, getting enough sleep can be a challenge. In one survey in the UK, 88% of...
One way that Enroll-HD is unique is that it is designed to be a public resource shared by the whole HD research...
Enroll-HD will make data available to scientists all over the world while protecting the privacy of study participants. This works through a...
The beginning of 2015 was a turning point for drug trials in HD—the end of one era, and the start of a...
Improving how a disease is treated doesn’t always require a scientific breakthrough. It can be as straightforward as identifying which medical centers already have...
Enroll-HD Around the World
The goal of Enroll-HD is to accelerate the discovery and development of new therapeutics for HD.
The goal of Enroll-HD is to accelerate the discovery and development of new therapeutics for HD.
Updated as of 10/1/2018 |
Active Participants 
Clinical Sites Worldwide 
Nations Participating Enroll-HD launched in 2012. The study now includes thousands of people around the world and is still growing.
Updated as of 11/01/2018
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