Recent News Stories
Enroll! Newsletter
A New Dataset Release—and a New Era for Enroll-HD

As of Thursday 14 December, 2016,  a new batch of data from Enroll-HD is now available through the website. This is the third periodic dataset release—a set of de-identified records prepared for research—but it’s substantially different from the previous two. It is more than double the size, including information from 8,714 people. And because it […]

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Research Update: Q&A with Sylvain Chouinard

Chouinard is a neurologist and co-director of the André Barbeau Movement Disorders Unit at Montreal’s major university hospital, the Centre hospitalier de l’Université de Montréal (CHUM), one of the largest sites for Enroll-HD. Your clinic has recruited a huge number of people for Enroll-HD. How do you do it? We’re following 500 to 600 patients […]

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Science in Public

Medical research can be intensely competitive—and, as a result, surprisingly secretive. Researchers can be reluctant to share data or describe what they’re doing because they’re afraid their ideas might be taken and they’ll be scooped. In science, there’s no second prize: Whoever makes a discovery first gets the credit. Although scientists agree in theory that […]

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Q&A Behind the Scenes with…Maria Ramos-Arroyo

Maria Ramos-Arroyo has been part of HD research from the beginning of her career. A member of the team that originally discovered the location of the gene from samples from Venezuelan people, she would later be the Spanish representative on the steering committee for REGISTRY, the study that preceded Enroll-HD in Europe. She is now […]

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Sticking With It

For Enroll-HD, signing up new volunteers is only the start. The most valuable information gathered by the study will come from collecting data on the same people followed over a long period of time, to track and compare changes that take place over years. For that reason, retention—helping people stick with the study—is just as […]

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The decision

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 told what your gene status is, and it won’t even be revealed to the site staff who do the questionnaires and other exams for Enroll-HD. Your doctor, and the other medical staff at […]

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The Youth Connection

Life for a young person in an HD family can be tough. At home, there may be responsibilities such as helping with household chores or being involved in caregiving. Outside the home, there’s the constant feeling of being an outsider. While other teens and young adults focus on studies and fun, youth in HD families […]

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A New Approach in Chile

Many Enroll-HD sites are located at academic medical centers—institutions with medical schools and teaching hospitals, and often physically linked to elite universities. But the first study site to open in Chile is quite different. It is located at CETRAM, a unique patient-centered clinic in a working-class neighborhood in Santiago, the country’s biggest city. Since it […]

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A First for Ireland

Enroll-HD is now up and running in Ireland, the first time the country has joined a large-scale international study of the disease in people. The launch was the combined effort of the Huntington’s Disease Association of Ireland (HDAI) and neuropsychologist Niall Pender, who together put resources in place to launch the study. “There’s a great […]

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Research Update from Palm Springs

In 2016, CHDI’s annual Huntington’s Disease Therapeutics Conference (HDTC) in Palm Springs, California brought something new and an indication of where HD research is now heading: a session packed with updates from clinical trials. Speakers at the three-day conference, which includes researchers and clinicians from universities and pharmaceutical/biotech companies, recapped some of the year’s big […]

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Site Investigator Meetings: Bringing it Together

By 2015 Enroll-HD was underway on four continents, in some sites for as long as three years. With so many sites in so many nations it was time for the core personnel to meet up again for an investigator meeting. Getting everyone together ensures that every site is up to date and that each is […]

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Q&A with Sarah Tabrizi

Sarah Tabrizi is involved in HD at almost every level. She’s professor of clinical neurology at the National Hospital for Neurology and Neurosurgery and director of the Huntington’s Disease Center at University College London and the National Hospital for Neurology and Neurosurgery, Queen Square, which serves more than 800 families. She leads a large and […]

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Huntingtin-lowering Trial Begins

The first test of a treatment intended to lower the amount of the protein that causes HD was administered to its first patient on September 3rd, 2015, according to the study sponsor Ionis Pharmaceuticals (formerly Isis Pharmaceuticals). The treatment, IONIS-HTT-Rx, is a short stretch of DNA that is designed to reduce the production of the […]

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Sleeping On It

As anybody from an HD family knows, getting enough sleep can be a challenge. In one survey in the UK, 88% of people with HD said they had sleep problems, including waking up in the middle of the night, restless leg movements in bed, waking up too early in the morning, or being sleepy all […]

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Q&A with Hugh Rickards

People with HD may consult with a psychiatrist, a neurologist and a psychologist for their diverse symptoms, but what they really need, says Hugh Rickards, FRCPsych, MD, is a “Huntingtonologist”: A doctor who has been trained in all the diverse manifestations of the disease, from motor control to emotional issues to cognitive changes. Rickards, who […]

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Study Data Now Available

As of early 2015, the first wave of data from Enroll-HD is now available for researchers around the world to ask new questions about HD. Making this first “data cut” available is a major milestone in the study. It is the culmination of years of effort by participants, site staff, study coordinators, quality control experts, […]

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Dawn of a New Era

The beginning of 2015 was a turning point for drug trials in HD—the end of one era, and the start of a new one. In 2014, two of the longest-running trials of drugs for HD ended in disappointment. But this year, five major clinical trials for HD drugs are either underway or almost ready to […]

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HD’s “Other” Genes

People often talk about HD in black and white terms: You either have the gene or you don’t. If you do, people say that your ‘repeat length’—the number of extra CAG segments in your HD gene—determines how early or late you will get signs and symptoms of the disease. But HD is not really that […]

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Behind the Scenes With… Grzegorz Witkowski

Poland was one of the first European nations to join Enroll-HD. Grzegorz Witkowski, MD, PhD, a physician at the Institute of Psychiatry and Neurology in Warsaw, is the Polish language area coordinator (LanCo) for the European Huntington’s Disease Network, which means he acts as an official representative, translator and point person for the operations of […]

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You Don’t Have to Know

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 with her other family members despite not knowing whether she carries the gene, and she’s glad that she did. “For me personally, I think there’s no way we’ll fix the disease unless we […]

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The Get-Together in San Diego

In 2008, Shelly Meadows got the news that her uncle had just been diagnosed with HD, a disease she knew nothing about. She hung up the phone and went straight to her computer, and what she learned online scared her. If he had the gene, and it ran in families, then did that mean she […]

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Q&A with Michael Orth

Clinical neurologist Michael Orth, MD, PhD, knows the power of numbers. Big studies allow him to find so-called outliers—people with the HD gene who are much healthier or sicker than average, given the same number of CAG repeats (the expansion in the HD gene that causes the disease). To identify these extreme individuals, he taps […]

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Behind the Scenes: A Q&A with Amy Chesire

At her first job after college at a nursing hospital in southern California, about 25 years ago, Amy Chesire met a man named Ralph who had Huntington’s disease. It was the first time she’d ever heard of it, but it would be the beginning of a long career working with people with HD. Years later […]

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Global Talks: Translating Requires Help from Around the World

How do you say “a big job” in Finnish, Portuguese and Dutch? For a global project like Enroll-HD, making sure everything is accurately translated is essential. Anything that someone joining the study reads, like a questionnaire or the consent form, and many of the documents that the clinic staff read while working with a participant […]

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Measuring Success: How Do You Know If Your Treatment is Working?

Some of the most promising therapies for HD are based on the same idea: reducing the amount of mutant huntingtin in brain cells. Huntingtin (sometimes called HTT) is the malfunctioning protein made by the mutant HD gene that clumps up inside neurons. There’s lots of evidence from lab experiments that those clumps make the cells […]

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Turning Lemons into Lemonade: Learning from Disappointing Trials

When a potential new treatment is tested for the first time in people, everyone hopes for the best—that this will be the one that really works and really makes a difference for patients. But the reality is that most drugs aren’t breakthroughs. In fact only about one in five of the drugs that are promising […]

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Quality Improvement Case Study: Cystic Fibrosis

About 14 years ago, the Cystic Fibrosis Foundation (CFF) began analyzing data from its national registry of people with the disease in order to improve routine care. CF and HD are both genetic diseases, and both affect about 30,000 people in the US. CF causes thick mucus to impair lung function and digestion, and it […]

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Enroll-HD: A Public Resource

One way that Enroll-HD is unique is that it is  designed to be a public resource shared by the whole  HD research community. 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 […]

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How Will I Be Invited to Join a Clinical Trial?

If you are part of Enroll-HD, you may have the chance to join other clinical studies and clinical trials. The words mean slightly different things (and not everyone uses the words in the same way). Trials usually test either a new drug or a non-drug therapy such as exercise or diet for HD. Studies, on […]

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Improving the Quality of Care Worldwide

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 the healthiest patients, finding out exactly what they do to ensure their patients’ health, and getting other clinics to use those methods. Such “quality improvement” projects have already made a big difference in the lives of people with cystic […]

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Family Profile: The Bjorklunds

Erika Bjorklund is in the midst of what anybody would call a busy summer. She’s just finished her second year of medical training to become an osteopath, which means that after weeks of intense studying she’ll have a marathon test in June that covers everything she’s learned in the past two years. As soon as […]

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HDSA Endorses Enroll-HD

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 has signed on to any research project. “There aren’t a lot of times in science that you can call something a potential game-changer, but this is one of those times,” says Louise Vetter, Chief […]

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Behind the Scenes: A Q&A with Dawn Rogers

As a coordinator for the Enroll-HD site in Manchester, UK, Dawn Rogers works with people who have signed up to participate for this and other HD studies. For the time being, she is also doing another job: Helping make sure that all the study sites in the UK transition smoothly from REGISTRY to Enroll-HD. As […]

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Portrait of a Clinic: Columbia University

The HD center at Columbia University Medical Center in upper Manhattan is not glamorous. The big old buildings on 168th Street are gloomy, and the HD clinic itself is modest— just a small waiting room and a handful of cramped exam rooms. But this clinic has been one of the highest-recruiting sites for Enroll-HD. The reasons for this success are straightforward: […]

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How Registry becomes Enroll-HD

The most complicated phase of Enroll-HD is just beginning. The European sites that are taking part in Registry began transitioning into Enroll-HD at the end of 2013, after more than a year of preparation. The first European participant to officially become part of Enroll-HD signed up in Ulm, Germany on December 6, 2013. Transforming one […]

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Australia and New Zealand Join Enroll-HD

The first participant in Australia signed up for the study in Melbourne in August 2013. As of March 2014, the study is underway at two sites in Australia and two in New Zealand, with 76 people in the region signed up. This wing of Enroll-HD covers a vast geographic area. It includes people on Australia’s […]

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Where Does My Data Go?

Enroll-HD will make data available to scientists all over the world while protecting the privacy of study participants. This works through a process of double coding. All data collected as part of the study is maintained separately from your own medical records. Your name is never entered into the Enroll-HD database. Instead, your data is […]

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Q&A With Taíse Cadore

HD will get new attention across Latin America in 2013, as Rio de Janeiro hosts the World Congress on Huntington’s Disease and Enroll-HD gets underway across the region, says Taíse Cadore, president of the Associaçäo Brasil Huntington (Brazilian Huntington’s Association), a nonprofit support and education organization based in Säo Paulo. She has been involved in […]

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Highlights from the 2013 World Congress in Rio

In September 2013, nearly 500 people gathered in Rio de Janeiro, Brazil for the 2013 World Congress on Huntington’s Disease. It was the first large global conference focused on the research and care of HD to be held in Latin America, drawing people from 41 nations. International HD experts presented the latest scientific and medical […]

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Q&A with Bev Heim-Myers

As Enroll-HD gets up and running in Canada, one of the leaders in the HD community explains how the study will take shape in such a diverse, sparsely-populated nation. Bev Heim-Myers is CEO and executive director of the Huntington Society of Canada, a non-profit that supports research and family services across the country. Q: How […]

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How Enroll-HD plans to improve quality of life

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 clinical centers around the world that will be involved in the study, it should be possible to single out the ones that consistently have healthier patients and identify what they are doing right. […]

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Master Class: An Expert Training in Buenos Aires

As Enroll-HD officially got underway in Latin America, medical staff from across the region convened at a workshop in Buenos Aires in April 2013 for expert training on how to administer Enroll-HD. More than 35 neurologists, neuropsychologists, site coordinators and others from Argentina, Peru and Chile attended the two-day session. It was the first state-of-the-art […]

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A New Start in Latin America

In early 2013, Enroll-HD officially got underway in Latin America. The first five participants signed up at the Instituto Frenopático in Buenos Aires, Argentina, a clinic focused on the diagnosis and treatment of neurological diseases. About 170 more people were expected to register at the clinic that year, says Federico Micheli, MD, chief of neurology at […]

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Q&A with G. Bernhard Landwehrmeyer

Clinical trials that test new therapies usually get all the attention because they can have a fast payoff if the drug being tested actually works. But an observational study like Enroll-HD, which tracks how people affected by HD change over time, has a potentially transformative impact that goes far beyond one new drug or treatment, […]

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The Startup at Rockford Illinois

When people in the small US manufacturing city of Rockford, Illinois began discussing what help they most needed in dealing with Huntington’s disease, a few themes became obvious. Even though social services were available, it wasn’t always easy to access them. Also, there was a desperate need for a local medical specialist. It was just […]

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