Enroll-HD is a worldwide Huntington's observation study to accelerate progress towards effective treatments.
Enroll-HD is a collaboration between Huntington's disease family members, clinicians and researchers.
The study is not just for those who have tested positive for the disease. Those with a negative result, as well as family members and spouses, can take part in the study. The data from this wide range of participants means that researchers can gain valuable insights into the natural course of the disease in individuals who are not at risk. Non-blood relatives, such as spouses, are also important as they help researchers understand the disease's broader impact on families and how it affects those who are not directly at risk.
Huntington's Ambassador, Becky, took part as a negative blood relative. She has shared information about her Enroll-HD appointment and why taking part in this global study is important to her.
Becky's first appointment was in the NIHR Exeter Clinical Research Facility building in October 2024.
I had a lovely research nurse, Jessica, who took care of me from start to finish. Jessica started by asking questions about me, my health and collecting information about me and my family tree. Noting which members of my family have been diagnosed with Huntington's disease. Jessica collected a blood sample from me, which is used to analyse my DNA and other biological data.
Whether you are symptomatic, at risk, negative or a spouse, the appointment format is the same.
The yearly cognitive testing is really valuable for those, particularly those with symptoms. They help in identifying cognitive decline, monitoring disease progression, and potentially informing future clinical trial designs.
I was tested to see how well I move, think, remember, perform daily tasks, and behave. I was asked to walk a straight line in a hallway. I completed cognitive tests where I followed a series of colours in a row, speaking each colour as I went. My speed was recorded and the test was repeated several times, but in a slightly different way.
Becky will attend yearly appointments for the Enroll-HD study. They have given her the opportunity to take part in other research studies for Huntington’s disease in between, but she retains the right to withdraw from the study at any time.
For me, it is so important to take part. I hope to contribute to finding answers to this terrible disease. Together, in the Huntington's disease community, we are stronger.
Watch Becky's full story below.
About Enroll-HD
Your involvement in clinical research studies such as Enroll-HD will help us better understand Huntington's, help improve the standard of care for Huntington's disease patients, and accelerate the development of effective treatments for Huntington's disease.
By taking part in these types of studies, you will find out more about Huntington's and become familiar with some of the types of assessments commonly used in clinical trials. By participating in Enroll-HD you can also choose to be invited to join other Huntington's disease research studies and new drug trials that are happening near where you live.
Enroll-HD FAQs
If I am at risk, will I find out my status?
No. Enroll-HD does collect a blood sample to analyze CAG repeats in the huntingtin gene for research purposes, but this result is not shared with the participant or the local site. If you want to know your genetic status, you can discuss predictive or diagnostic testing with your study site staff later.
Is my data confidential?
Yes, all data and samples are given a unique ID number to keep information confidential.
How long do appointments take?
Initial visits take around an hour, subsequent visits take around 45 minutes.
Will I be paid to take part?
You will not be paid to take part, but travel expenses can be reimbursed.