Demystifying Enroll-HD

You might have heard of this thing called Enroll-HD, but don’t really know what it’s all about, what it means to participate, or who you will be seeing at the study clinic. We bring you this blog post written by Auckland-based study coordinator Christina Buchanan on why she loves being part of Enroll-HD and what to expect from your visits to the study centre.

Enroll-HD is the LARGEST international observational study on Huntington’s disease. It is a huge team effort from researchers, clinicians (doctors and nurses), and members of the HD community that helps us to keep improving our understanding of HD, improve clinical care for those living with HD, and support the design of clinical trials for potential HD treatments.

Why I love being a Study Coordinator for Enroll-HD

My older brother Jimmy was born with Down syndrome, so I grew up knowing that changes in something called DNA made people different from each other. From the age of 11 I knew that I wanted to be a scientist – to find out more about DNA, and how to help people with different genetic challenges. Fast forward 25 years, and after a solid career as an “academic scientist” I realised I wanted to work more directly with people, rather than with their cells, so I retrained in Genetic Counselling and ended up using my latest degree to transition into clinical research. One of my clinical research roles is working as a study coordinator for Enroll-HD at the Auckland Hospital site (there are also sites in Christchurch and Wellington). I work with people and families affected by HD – whether they have it themselves, or someone in their family has it (parent, child, partner, sibling), everyone is affected by HD. Participants can either be HD gene positive, controls, or untested.

I see participants yearly and take them through a series of assessments (cognitive and behavioural) while a study doctor carries out the motor assessment – the whole visit takes about 2 hours. Because I see people repeatedly, and because of the kinds of things that people share in the study assessments, we get to know each other. This is one of the things I love about doing what I do. The relationship formed from being part of Enroll-HD is special and I feel privileged to be involved. Participants give of themselves: their time and effort, they share stuff that can be difficult to talk about and do assessments that can be anxiety provoking. All of this is greatly appreciated, and in return Enroll-HD aims to enhance the understanding of HD, support clinical trials and improve clinical care by encouraging regular clinic visits. On July 25 2022, Enroll-HD celebrated their 10 year anniversary. I’ve only been part of the Enroll-HD team since the beginning of 2019, but I can see that the work of our team definitely fulfills the aims of Enroll-HD.

Thank you to all the generous participants who take part in Enroll-HD – I love working with you and know that together we are working towards something bigger than us, that is already helping many people in multiple ways.

Here is a bit more about what to expect in your first visit:

Your first visit - Informed consent

Your first visit for Enroll-HD will be as a potential study volunteer or ‘participant’. First, we’ll talk over the information sheet which includes the consent form that we’ve already sent you. This is when you can have your questions answered. It’s important to make sure you know enough about the study to decide whether it is right for you to participate. It will take some time (30 minutes or so) to discuss everything on the lengthy form if you’ve never been part of an HD observational study before. The form is attached, so you can read through it and think about questions you might have.

If you decide to join the study, you will sign the informed consent form. That’s the consent part. By signing the document, you will have consented to take part in Enroll-HD.

You’ll also talk about your medical history—if you have symptoms, when you were first affected—and what medications you’re currently taking and formerly took. If you are willing, you will also describe your family history with HD (this is optional).

Your secret code

You’ll provide a few details about yourself, such as your name, birthdate, and, just like with a bank account, some other more secure details that only you and your family will know. These will be used to generate a unique HDID code that will be associated with all your information for the Enroll-HD study. This code is the only way to identify your records. Your name and other identifying information will not leave your clinical site. It will never be typed into the Enroll-HD database for people outside your clinical site to see.

During this first visit you’ll meet with the neurologist, who will work with you to do a motor assessment. You’ll take some tests to measure memory and thinking, which are like brainteasers or puzzles and sometimes involve using a paper and pen. You’ll also be asked about your mood—whether you’ve been depressed or are having other psychological or emotional difficulties. You’ll also give a blood sample, which will be sent to a secure biobank overseas—a specialised lab that stores biological samples at high security. To further protect your privacy, this blood sample is given a special code, which is different from the HDID number that are used for the other parts of the study.

What it means to participate

While you’re doing these evaluations, you’re officially a participant rather than a patient. The people working with you are now in the role of researcher, rather than health providers.

The first visit may take between 1½ and 2½ hours. Follow-up visits may be less than an hour or up to two hours, depending on what is discussed.

The visit itself is pretty straightforward, but it can be a long day, and can bring up fears about the future and other difficult feelings. We recommend that before the visit participants make sure that they will have someone to talk to afterward if they need the emotional support.

Here is a link to the Enroll-HD site for more information:

https://www.enroll-hd.org/for-hd-families/