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.
NEW!
Fourth Enroll-HD periodic
dataset now available to interested
researchers.
Fourth Enroll-HD periodic
dataset now available to interested
researchers.
Join the worldwide effort to
advance Huntington's
disease research.
advance Huntington's
disease research.
HD Research News 
- Mar 21, 2019 An Updated Trial Design for Roche's Huntingtin Lowering Trial
- Mar 14, 2019 When interrupting is good: genetic hiccups that protect against Huntington's disease
- Mar 05, 2019 Huntington's disease therapeutics conference 2019 - Day 3
Featured Stories from Enroll! - the Enroll-HD newsletter
As of early 2015, the first wave of data from Enroll-HD is now available for researchers around the world to ask new...
Enroll-HD will make data available to scientists all over the world while protecting the privacy of study participants. This works through a...
HD will get new attention across Latin America in 2013, as Rio de Janeiro hosts the World Congress on Huntington’s Disease and...
Medical research can be intensely competitive—and, as a result, surprisingly secretive. Researchers can be reluctant to share data or describe what they’re...
How do you say “a big job” in Finnish, Portuguese and Dutch? For a global project like Enroll-HD, making sure everything is...
At her first job after college at a nursing hospital in southern California, about 25 years ago, Amy Chesire met a man...
As anybody from an HD family knows, getting enough sleep can be a challenge. In one survey in the UK, 88% of...
In early 2013, Enroll-HD officially got underway in Latin America. The first five participants signed up at the Instituto Frenopático in Buenos...
Enroll-HD is now up and running in Ireland, the first time the country has joined a large-scale international study of the disease...
About 14 years ago, the Cystic Fibrosis Foundation (CFF) began analyzing data from its national registry of people with the disease in...
When a potential new treatment is tested for the first time in people, everyone hopes for the best—that this will be the...
Chouinard is a neurologist and co-director of the André Barbeau Movement Disorders Unit at Montreal’s major university hospital, the Centre hospitalier de...
Erika Bjorklund is in the midst of what anybody would call a busy summer. She’s just finished her second year of medical...
Maria Ramos-Arroyo has been part of HD research from the beginning of her career. A member of the team that originally discovered...
People with HD may consult with a psychiatrist, a neurologist and a psychologist for their diverse symptoms, but what they really need,...
One way that Enroll-HD is unique is that it is designed to be a public resource shared by the whole HD research...
The beginning of 2015 was a turning point for drug trials in HD—the end of one era, and the start of a...
Life for a young person in an HD family can be tough. At home, there may be responsibilities such as helping with...
As of Thursday 14 December, 2016, a new batch of data from Enroll-HD is now available through the website. This is the...
Poland was one of the first European nations to join Enroll-HD. Grzegorz Witkowski, MD, PhD, a physician at the Institute of Psychiatry...
The HD center at Columbia University Medical Center in upper Manhattan is not glamorous. The big old buildings on 168th Street are gloomy, and...
By 2015 Enroll-HD was underway on four continents, in some sites for as long as three years. With so many sites in...
In 2016, CHDI’s annual Huntington’s Disease Therapeutics Conference (HDTC) in Palm Springs, California brought something new and an indication of where HD...
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...
If you are part of Enroll-HD, you may have the chance to join other clinical studies and clinical trials. The words mean...
For Enroll-HD, signing up new volunteers is only the start. The most valuable information gathered by the study will come from collecting...
As a coordinator for the Enroll-HD site in Manchester, UK, Dawn Rogers works with people who have signed up to participate for...
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...
As Enroll-HD gets up and running in Canada, one of the leaders in the HD community explains how the study will take...
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...
Many Enroll-HD sites are located at academic medical centers—institutions with medical schools and teaching hospitals, and often physically linked to elite universities....
Clinical neurologist Michael Orth, MD, PhD, knows the power of numbers. Big studies allow him to find so-called outliers—people with the HD...
The first participant in Australia signed up for the study in Melbourne in August 2013. As of March 2014, the study is...
The most complicated phase of Enroll-HD is just beginning. The European sites that are taking part in Registry began transitioning into Enroll-HD...
Clinical trials that test new therapies usually get all the attention because they can have a fast payoff if the drug being...
In September 2013, nearly 500 people gathered in Rio de Janeiro, Brazil for the 2013 World Congress on Huntington’s Disease. It was...
People often talk about HD in black and white terms: You either have the gene or you don’t. If you do, people...
Some of the most promising therapies for HD are based on the same idea: reducing the amount of mutant huntingtin in brain...
Sarah Tabrizi is involved in HD at almost every level. She’s professor of clinical neurology at the National Hospital for Neurology and...
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...
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 test of a treatment intended to lower the amount of the protein that causes HD was administered to its first...
As Enroll-HD officially got underway in Latin America, medical staff from across the region convened at a workshop in Buenos Aires in...
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...
In 2008, Shelly Meadows got the news that her uncle had just been diagnosed with HD, a disease she knew nothing about....
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 4/1/2019 |
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 04/01/2019
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